Reclaiming Life One Day at a Time

Or possibly, Finishing the Circles I Left Half-Drawn

I usually post glimmers on Sunday. This may not look like a glimmer, but it truly is. The glimmer is having the space and bandwidth to gather the scattered pieces of my life and put them into perspective. The added glimmer is that I can now do this at RockWall Cottage. It is good to be home. Weber feels much the same.

Part of reclaiming our life is trying to weed through the mountains of half-finished things that were set aside. Tonight we finished watching The Voice. Earlier, we finished the season of Matlock. One by one, we are completing the circles that were left half-drawn.

Which brings me to this article. There are so many half-written pieces in my drafts file! It feels much like my Inbox, which is currently out of control. Yesterday, I published one of those pieces; this is another.

I don’t know exactly what I was thinking when I wrote this in mid-May, but I probably was trying to envision the day when Scott could return to being a functioning human. We are there. Phew. But this is what I wrote in May:

I have this fantasy about what lies ahead. I hope it is a realistic fantasy, but that is an oxymoron. Maybe it is a realistic dream instead. That sounds more like hope, doesn’t it? Or, it could just be applying magical thinking before something happens. I think that is probably more like envisioning.

I often envision things that do come true, like the window washer.

That is where I stopped. I think I put a reminder in to tell myself where to go next, but I am not sure. Or, did I write the story elsewhere? I have no idea, but I will share it now. Forgive me if I am repeating myself.

The windows in the final hospital room overlooked a corner of the University of Washington campus. This was a better view than some rooms, but the windows were covered with the evidence of winter rains. I wondered if they ever cleaned them; surely they did. The next morning, I returned to the room to find ropes hanging outside the window.

Scott said, “You just missed the window washers.”

These things happen to me often. He wasn’t surprised when I told him the story.

But going back to my “realistic fantasy” of better days. I believe it was because I wanted to be able to write again. I originally titled this piece, I Miss Writing. Not just write but actually complete articles, maybe even a book. Yet, I was and still am as unfocused as this article!

Then, in the draft, I added the following quote:

I remember a young man in Paris after the war—you have never heard of this young man—and we all liked his first book very much and he liked it too, and one day he said to me, “This book will make literary history,” and I told him: “It will make some part of literary history, perhaps, but only if you go on making a new part every day and grow with the history you are making until you become part of it yourself.” But this young man never wrote another book and now he sits in Paris and searches sadly for the mention of his name in indexes. —Gertrude Stein

It is a sad quote and probably indicative of the overwhelm of caregiving for a liver transplant patient—something I will discuss more in a minute. I was certainly making life history every day. I have no question that I was growing. But how do I become part of my own history of being a transplant patient caregiver? What does that even mean?

I think it means keep writing. It is so easy to get bogged down right now with the following questions:

• What do I write?

• Is it important?

• Is it different than what anyone else is saying?

• What content are the readers who subscribed looking for?

• What do I write when topics become dead horses that can’t be kicked to life?

Those are the kind of questions that kill the joy of writing. They only plague me when I am weary, when I think I have talked about liver transplants too much, when I can’t stay focused, and when my lifeblood feels like it has been drained out of me.

To better understand the cumulative drain of the past seven months, I researched the impact on caregivers and came across the following in a research article:

Although similar demands exist for caregivers of patients with various chronic illnesses, in transplant medicine, there is the added pressure of being a “model caregiver” to aid in transplant eligibility and maintenance on the transplant waiting list.⁷

While Scott was evaluated as a potential recipient of a transplant, I was being evaluated as to my capability to care for him. His evaluation was based on the physical; my evaluation was personal. It will take time to unpack that process that was sometimes intrusive, but more often the result of being observed.

Then, there was an overwhelming amount of information to learn and navigate. One day, I told a nurse, “I have a PhD, and it was not this difficult.”

The organ transplantation process is both medically and logistically complex, requiring meticulous coordination of care to guide the patient through each phase. Patients with end-stage organ failure often have decreased physical as well as cognitive functioning (eg, hepatic encephalopathy in patients with advanced liver disease) that limits their ability to navigate the transplantation process.⁴⁵ Yet, it is imperative that patients adhere to a battery of appointments and medications; if not, they may jeopardize their transplant eligibility or experience adverse outcomes such as graft rejection or loss.⁴⁶ Therefore, the caregiver often plays a critical role in interfacing with the health care system and supporting the patient to meet transplantation requirements. (Source)

The entire article is worth reading, especially if you know anyone going through a transplant process. Reading the article helped me to feel compassion for myself and gratitude for all those who helped me heal over the past ten years. Without healing from the trauma I experienced as a child and young adult, I would have collapsed. I had learned to recognize and process triggers, regulate my nervous system, and make healthy self-care choices. These skills were essential for preventing the past seven months from becoming an added layer of trauma in my life, something that the research in the article identifies as true for many caregivers.

Back to the unfinished circles. To continue writing, I must accept that this transplant caregiver experience has become a part of my history and then consider how it has changed me—possibly evolved me—in ways I do not yet understand. The only way I can come to terms with all of it is to keep writing.

And so I will—no matter how rambling my posts may appear. I am reclaiming my life, but I am also navigating how different that life will undoubtedly be.