lung disease at its finest

James' fever is gone, and all of his cultures have come back clear. This is a significant relief. He has even been requesting food. We are certainly on the right track. His heart rate has been slightly elevated, but not enough to be a cause for concern. Unfortunately, it is uncomfortable for James, and can lead to a sense of breathlessness. He has started an anti-anxiety medication to hopefully help with the fears that are associated with difficulties breathing. 

It is hard to convey in words the realities of James' struggle to breathe. Everything has become difficult for him. He has lost a lot of his independence to lung disease. He cannot stand long enough to brush his teeth or wash his face. He cannot bend down to put on socks or shoes, or even pick up items from the floor. He is afraid to shower, and even going to the bathroom is a chore. A single trip to the washroom completely exhausts him, and leaves him ready to sleep for hours. I bought him ear plugs to help him cope with the volume in the hospital, but the sound of his own breathing scared him. This is the reason that I couldn't sleep at night. I would wake to check on him, and look for the rise and fall of his chest. There is no peacefulness to his sleep.

I watch the progression of his disease with helplessness. James rarely complains, and is always open and honest about his fears, as well as his strength and hope. Sensitivity can make it hard to cope, but James embraces this part of himself. He feels the full intensity of his emotions, and this includes the positive feelings of gratitude, and a deep understanding of the value of life. He will never be done fighting. He loves being in this world, and all the coughing and wheezing in the world will never change that attitude, and a resolve to truly be alive. It is a lesson for the rest of us. It is about shifting perspectives and values. 

What are the real priorities in your life? Are you truly living? We all try to live without taking our world for granted, but it can be hard to do on a daily basis. James and I have no choice. We live in within a precarious balance. Our world is ripe with unpredictabilities and uncertainties. His relative stability of health is completely a function of his level of sickness. That is, at least in definition, but also in feeling, I believe. Everything seems to be determined by the extent of his illness (on any given day, or in any given moment). This is also in respect to his place on the transplant list. It is all dependent on a balance between "sick enough" and "too sick" for transplant. We don't want him to deteriorate further, or be listed as "rapidly deteriorating", but it is also painful to imagine this life for months on end, in wait of a single phone call.