Sunday, November 18, 2012


It is lovely to slow down on the weekends and make a conscious effort to focus on slowing down. We have each carved out a space in our little apartment. We are happy to share that space with each other and still be able to engage in our own activities and interests.

I have minimal ability to focus these days, but I can manage to read a few pages, check my e-mails, and write a blog post. I will often do some basic crafts to occupy the hours. I will eventually disappear for short walks and household errands (without any real agenda aside from fresh air and getting out of my head). James is content on his computer without disruption for any length of time. Ophelia will even makes an appearance these days for afternoon naps in the sun puddles on the floor. We are all ready for naps by the time our morning caffeine starts to leave our systems. 

All that being said, it is really difficult to feel confined to within the house. James' limitations, in regards to mobility and immunosuppression, mean that we have to redefine our quality time together. It was only a few short weeks ago that James and I were able to walk through high park, and Kensington market. We were visiting museums, and libraries. We truly able to make the most out of our time together. The changes are truly startling to contemplate. There is a grief that I am not prepared to acknowledge (at this point, at least). 

Instead, James and I have to create a different reality. We cuddle up together, and reminisce about the last few years. We dream of a different life together post-transplant (and for our return home after re-transplant). We have a few games to distract and entertain, but mostly, I crave the laughter and smiles. I want to be able to keep singing and dancing together.

I want the impossible. That is, I want a return to only a few months ago. I look through our wedding photographs. I remember the possibility of a future of our dreams. There was an unbelievable spirit of shared joy and happiness. It was only a few months ago, but in some sense, it feels a lifetime away. We never could have imagined (or would have allowed ourselves to imagine) that James and I would be back in Toronto waiting for a second double-lung transplant a few weeks later.

I don't believe that James and I were naive. There was an illusion of health. We had a perfect year post-transplant with minimal complications. There were no warning signs. It is impossible to make sense of, because of the unpredictable nature of the disease (and the complete unknowns from the world of medical science). There are no explanations. It is hard to accept the circumstances without answers, but James and I have no choice. We have to keep focused on living. This is nothing more important that being here, alive, and together. I am grateful for a warm body in my bed tonight, and a hand to hold throughout the night.

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