Friday, July 11, 2014

living the good life

I wrote the following around James' lung transplant anniversary, but I never posted it, because it felt incomplete. It still feels incomplete, but it think it captures a lot of the complex (and often, contradictory) emotions that James and I experience on a daily basis. We are propelled forward in time,  but James and I both still carry the scars of our transplant journey. We are still on that journey. We are just in a different place:

One year later, James and I are alive. We are alive, and in love, with each other, and with life. 

One year later, James and I are no longer hostage to a disease. Our lives are not on hold. We still live with a great deal of uncertainties, but it does not prevent us from being able to live.

One year later, I continue to reflect with wonder and awe. Will it ever stop feeling surreal?

One year later, I still wake in the night to listen for James' breath, and wait for a rise in his chest. I do not have complete trust in James' health.

One year later, I still fall apart on a regular basis, but James is able to comfort and hold me. There are fewer pieces to put back together, and all of them are slowly changing shape.

One year later, James and I relish in the resilience and strengths of our bodies. We marvel at our abilities to move with ease. We enjoy a labouring of breath as an indication of health in exercise. We are active each and every single day.

One year later, I continue to cope with floods of difficult memories. We only have to look to the present for reassurance.

One year later, I am a different person. We are both different people. James' second transplant changed us in ways that would have been impossible to imagine. We are still learning to make sense of these changes, and integrate them into our identities and relationships.

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The last few months have been a whirlwind. We have not had a lot of time to slow down and reflect. I cannot always afford the energy it requires to be social and active, but I know that it has been good for both of us to start connecting and re-connecting with friends and family. All of James' relationships have changed with his long-term absence from home. It is a difficult process to negotiate these changes, and re-establish those long-standing bonds that were impossible to nourish from his ICU bed. We are all in different stages in our lives, including James' loved ones. I also have to build a foundation here in Victoria of new friendships and networks.

James and I also have to contend with another social challenge in our post-transplant realities: We don't easily relate. Our life and death experiences separate us from our peers, and have come to inform every aspect of ourselves. We live in very different day-to-day worlds. Our values and perspectives are a reflection of those long months on the edge of death: Time is precious. Life is precarious. These realities are far more than a quote to share on Facebook (about living each day as though it were the last). We don't ever get to forget them. There are no absence-minded days to reassure these worries and concerns. We cannot spare a moment of the present. 

It is difficult to explain. I suppose, I don't have trust in a future. I am grateful for the perspective that allows James and I to cherish each and every moment, but hyper-awareness is also a heavy burden, or rather, a shadow on the brightness of our days. It would be wonderful to be able to forget, even for a few moments, and relish in the normalcies of lesser concerns. I want to feel a pure happiness that does not come with thoughts about the limits on our days together. Stay in the present. Stay in the present. Stay in the present. That was the mantra that got me through those endless months in the hospital. It remains relevant (and a necessity for survival).

James copes a lot better than myself. He has always lived with a very acute sense of his own mortality. He could never take any moment for granted, which again, is a blessing, but also a heavy weight. It is the privilege of health to be able to take your moments for granted.  It is a privilege of health to be able to live those moments without the constant knowledge of the limits (to those moments).

It is very difficult to share these thoughts and feelings without some level of guilt or shame. I fear that I will project a sense of ingratitude for James' incredible gift of another chance. My feelings of gratitude are parallel to my fears about the future. It is possible to hold two very different, but simultaneous emotions, without distracting from the presence of the one another. Transplant is the exchange of one set of problems for another, and I cannot lie to myself about that, at least, not after James' rapid decline into Chronic Rejection following his first transplant. In truth, I have more gratitude each and every single day. It only continues to grow with all the memories that James and I get to create together.

Here are some photos from the last few months:

GearUp4CF (100km for Cystic Fibrosis Canada) (c) Matt Smart and Megan Leslie
GearUp4CF (c) Matt Smart and Megan Leslie
GearUp4CF (c) Matt Smart and Megan Leslie
lounging and laughter in the backyard
Those last few photographs are from the cabin on the West Coast Trail. James talked about his dream to go to the cabin every single day in the ICU. There are not enough words to describe the joy at being able to realize this dream. It was a real physical challenge, but James has been working very hard to get strong enough for the feat. We were blistered, bitten, bruised, and in complete bliss. We look forward to heading back in a couple of weeks.

4 comments:

  1. Only someone who is living this path we share can truly understand how you both feel. We are not exactly in the place we thought we would be. Carl's surgery and recovery did not follow the path we expected. Some days life sucks plain and simple. BUT we are together!!! Carl is ALIVE and we are (finally) going to be married in a couple of weeks. We are planning a winter vacation. A year ago I was living day to day. Planning anything was impossible. We are living in the second chance we have been given. You have articulated my feelings exactly. as always your sweet smile gives me such strength. Love to you both.

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    Replies
    1. You always have the perfect words for me. I cannot even begin to express my complete joy and exhilaration for you and Carl. Yes, I agree, James' journey was also different than expected, and it continues to go on, but Carl and James are beside us at night, and holding our hands. Thank you for reminding me that I am not alone. I look forward to seeing some photos form your special day!

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