Wednesday, September 17, 2014

back home for a year!

Last night, James and I were awake in the wee hours marveling at the passage of time. We moved back home after James' re-transplant on September 18, 2013. It has been an exceptional year (to say the very least). We reflect back on the ebbs and flows, and the delicate balancing act that has become our lives, with complete and utter amazement. There are days that our lives still feel exceptionally surreal. It is strange to consider the leaps and bounds of change (and growth). 

We have always done our very best to project optimism and hope, but at the same time, James and I were always very honest with ourselves and with each other. We prepared ourselves for James' death on many different levels during James' re-transplant journey. We filed the appropriate paperwork. We had in-depth conversations about end-of-life decision-making in response to each indication of disease progression and further deterioration of James' health. We shared desperate words of love and sentiment with deep-seated fears (and unbearable grief) that each critical moment could be the final departure. We even called the funeral home to inquire about transportation arrangements after reaching the limits of medical intervention, and awaiting miraculous change, following James' post-transplant complications. 

All of those memories remain vivid with emotion. Yet, James is alive with the energies of childhood freedoms. We are firmly grounded in our lives. We are actively alive. We are dreaming of a future that extends beyond the day, week, or even month. It is a strange concept in the aftermath of our experiences. Our return to the world of the living has been a process unto itself. We are incredibly grateful to be here. 

Our lives are as complicated as ever, but in the most wonderful of ways. (We enjoy all forms of normalcies). We are going through a lot of change and transition, and in the process of major decision-making that would not have been possible a year ago. We never lose sight of our gratitude. 

As for this blog, I would love to see transformation here, as well. It would take conscious effort to return to habit, and commitment to a purpose or direction. I am definitely taking into consideration the possibility of writing more actively about our daily lives. I would need to dedicate some time and space to the act. The challenges remain simultaneously different, but similar, as our past experiences inform our present lives. For now, I just thought it was important to share the milestone.

Monday, September 1, 2014

final days of summer

I lost another blog post into the virtual world. The disappointment did not linger, and I am making another attempt to write. I have sentence fragments, partial paragraphs, and random thoughts scrawled on scrap paper from the last few weeks. I sit down to write, and I get caught in the emotion. It does not translate well (or easily) into language. Sometimes, I feel as though I repeat myself over and over again. I do not have a lot to write. It is the same, but with different words, I suppose.

A couple of weeks ago, James had a minor procedure (of no concern, I promise). It is always strange to be back in the hospital. James and I are both quick to panic without a reassuring handhold. I was repeatedly asked to leave his side without reason. I automatically returned to a state of fight. It was difficult to remain calm. I complied for the first request, and James insisted on my immediate return. It is a practice that is impossible to make sense of, and I had to be assertive. I was taken back to the weeks (and months) of constant advocacy that were required to be part of James' care in the ICU. Now, I had to fight to be present for vital sign readings, and medical history questionnaires. We both wanted to scream. We wanted our histories to be known. We didn't want to re-live any amount of trauma without one another. The fluorescent lights and smell of ammonia are enough to trigger a flood of memories. 

The surgery required general anesthesia, and James was gone from my side for four hours for a twenty-minute operation. I could not remain in the waiting room. I was not allowed to be present in the recovery room, nor was I told of the location. I walked the grounds of the hospital, found a small labyrinth, and foraged for wild blackberries. A few hours later, I made an attempt to write:

"I walked a labyrinth a couple of hours ago. The goal was not meditation, but rather, distraction. James was in the OR for a minor procedure, and I could not bare the waiting room. (Did I ever write about the waiting room? It is an experience unto itself). I thought a lot about writing; everything that I wrote about, and everything that I left inside. My body still holds memories at a cellular level. There is still a lot to share." One day, I hope to find the courage to share those parts of our story.

It is always a relief to walk away from the hospital. 

We are preparing for a lot of changes and transitions in the coming weeks. I might need to take to the blog more often. (In the least, I will need to find reason to procrastinate from graduate studies). James is eager to move forward, but I move with a lot more caution. I anticipate change with a nervousness about all the potential uncertainties. It is incredible to bare witness to all the various manifestations of fear in my life. I cannot escape it. I am always aware of its presence. (These are some of the realities of healing from ICU-related PTSD. This NY Times article, "Nightmares After The ICU," is an excellent read). 

That being said, I will not (and do not) allow fear to take away from the preciousness of our time together. We surround ourselves with love, and fill our hours with laughter and joy. We continue to spend a lot of time in nature. (There is a lot of healing to be found on the beach and in the forest). We enjoy reading in the hammock in the shade, and bicycle rides in the evenings. We have been rewarded with an abundance of fruits and vegetables in our garden. We discover new recipes and insist on eating well. 

That reminds me, I forgot that James had a CF Clinic at the start of the month. (Food and Cystic Fibrosis are intrinsically linked together). My update from Facebook: 

"A short Cystic Fibrosis Clinic update! James has gained 14lbs in the last six months! Fourteen pounds! Amazing, right? This has not been an easy feat with James' digestive issues. (Thank you, Rumble)! 

Best of all? James' lung function has increased by 6%. That is a major improvement. Although James's lung capacity exceeds expectation for re-transplant, and extended hospitalization, and James is no longer limited by a diminished capacity, it has always been a personal concern. We know that it is possible to lose 35% lung function overnight, and it is frightening to not have a large buffer against decline. We did not know that it was possible for his lung function to improve any further, because he has not seen any changes in his lung function since about 6 months post-transplant. 

We are certain that all of James' hard work at the gym and weight gain have contributed to this expansion in lung capacity. We'd also love to believe that the West Coast Trail and Pacific Ocean were part of his healing! Now, James has a better "buffer" against illness." 

That is all for now. A photo, or two, of course, to follow.