Saturday, May 4, 2013

closing in

I want to write, but there are no words (or in the least, words that come easily to me). We go through the motions on a daily basis, follow a structured routine in a sterile environment, and hold onto remnants of hope. It is strange to accept this form of "normalcy". It has become increasingly hard to imagine that ever distant future together.

We live within the boundaries of this hospital room. These boundaries seems to extend to our dreams, creating a sense of limitations, or rather, a threat to our future together. How do I describe the sensation? The walls are closing in and there is not enough time in the world to make everything right again. It is a challenge to remain positive, and conceive of a different life. We haven't really had our chance. We have found a way to make the most out of our time, but it still does not seem to be enough. We want to live together in health without the constant shadow of death.

James' lung function took a steep decline on the day after our wedding. We were given permission to return home to British Columbia, and in that time, James and I started to nest together. We re-arranged furniture in the house, scrubbed the floors, cabinets, and walls, and weeded our way through the courtyard jungle. His lung function continued to decline at a rapid rate, and it was rare that James and I would pass a day without an appointment or test at the hospital. We insisted on creating a life for ourselves in Victoria. 

Every single day, James and I spent time in nature together. We went for picnics on the beach between appointments. We rode our bicycle through campus to find deer foraging on blackberries. We hiked along the water, and went swimming on Salt Spring Island. We went pseudo-camping on the family farm, and woke to the screeching of peacocks. We found a way to make the most of our time. It was still possible. It was still possible to focus solely on living, and on living together. 

This experience changes everything. James can no longer walk without extensive support, or stand long enough to shower or brush his teeth. It is difficult to finish a sentence without feeling short of breath and gasping for air. He struggles to breathe with all movement. He requires 100% oxygen support to turn to his side or shift his body weight in the bed. He is not able or allowed to move without the help of several nurses. His excess of tubing is clamped to the bed. He is stuck in the most literal sense. We are both stuck. It is no wonder that it can feel as though the walls are closing in.

How do we cope? How do we remain positive? We focus on hope for a live-saving and life-changing transplant. We focus on gratitude. There is a lot to be grateful for. We are grateful for access to exceptional health care. We are grateful for genuine care. We are grateful for family and friends. We are grateful for generosity and kindness. We are grateful for support and understanding. We are grateful for love. We are grateful for each other.


  1. I keep praying for you both even though I don't know you except through your blog. But I can feel your pain and dependence on others for James's ADLs. I admire you both for your love for each other!

  2. Adena and James, have faith and you will break free yet again! Do not feel as though the walls are closing in simply find ways to reinvent what is possible. Be true to yourselves and strengthen yourselves daily. Each time we face our fear we gain strength, courage and confidence in the doing. So much love.

  3. Hey, just wanted to offer any encouragement I could. I read James's thread on the forums and am rooting for him.