Breath of the Universe

February 1, 2024

I sleep with Jose and have the night shift for meds – 1 am and 5 am.  Here at home, I have had months to perfect getting us both crammed into a hospital bed, so our nights are quite comfortable now.  I go to bed with the work area fireman-ready for both rounds of medication. As many of you know, I am a sound sleeper (for which I am very grateful) so 1 am is a struggle for me to get up and fumble through meds.  However, I am up ahead of time for the next round due to many years of waking between 4 and 4:30 to get Jose tended to before I go to work.  Several years ago, as we adapted to Jose’s changing needs for staying oriented and feeling safe, I got a large digital clock that is easy to read and also projects the time on the ceiling.  I have come to appreciate it so much in the last couple of days; no tracking down the cell because the time is always visible.

When I wake around 4:30 I notice a change in his breathing.  Yesterday his breathing remained steady and even, but slightly labored and softly audible.  When the hospice nurse came yesterday, she commented that she wished she could settle in for a nap because his room is so peaceful and relaxing.  We have quiet music, sunlit room, our evolving shrine, and his breath creates a calming rhythm that invites one to slow down and entrain with him.  However, today’s breathing is more shallow and rapid. I miss the relaxing pace from yesterday.

I listen to his breath with an ear on his chest and wait.  After ten minutes or so there are no irregularities, no stops and starts.  His heart is not so robust as yesterday, and like his breath, his heartbeat is more rapid and shallow.  As I lay waiting for apneas, I recall a post I had written shortly after Jose’s diagnosis that talked about lying beside him listening to his breath and pulse.  I grapple with how long ago that was and who we were when that post was written.  Then I want to shut my brain off because I am crushed by how much we have lost and how much time has passed.  I focus on my own big inhales and exhales until I am back in my body and can tune into Jose’s body.

The Good, The Bad & The Beautiful

June 16, 2009, 3:25 AM

On April 15 Jose had the blackout and fall and CT scan revealing the giant tumor. Since that time there have been 7 days in the hospital, 7 trips from Greensboro to Duke Hospital in Durham, 6 MRI or CT scans, 2 incidents requiring EMT’s and emergency vehicles and countless sticks to inject things into or remove things from Jose’s body.

There are certain predictable elements to each interaction with each new doctor. They have their moment of amazement that Jose is as functional as he is in spite of a giant tumor and so much trauma and drama, then they remark about his resilience and what a positive factor that is. When it is his turn to ask questions, Jose always asks about what outcome he can expect from all of this. We have gotten many different versions of no way to predict, everyone is different, hope, encouragement, new drugs and new research emerging all the time. Today, the radiation oncologist gave an answer I have not yet heard – “We know that since we can’t take the tumor out it will never be gone. Our hope is that for some period of time we can give you a better quality of life than you have now. It would be great if that period lasts a long time”

I woke up last night because Jose’s breathing was rough and ragged. I lay next to him with one hand on the pulse in his neck and with my cheek where I could feel his breath as he exhaled. I breathed and relaxed and meditated on the spirit of life flowing through his body, the rhythm of the pulse and the warm moisture of his breath. I remembered the tender things that have come out of this. When Jose was first diagnosed, he joked that with his treatment maybe he would age really fast and catch up with me, since there are times that I feel sad that my own cancer treatment aged me so much so fast. Yesterday I had my head in his lap and he was stroking my hair.  He said that he was sorry that he had not been affectionate so much lately, but he feels like he has to work so hard to stay strong that it is difficult to relax and be soft. No wonder he is so tired!!

Tonight, at the end of yoga class, focusing on breathing, I was enjoying the feeling of surrendering to the unity of my breath joining the breath of the universe – losing boundaries between the world within and the world outside. Then I recalled Jose’s labored breathing and the flow shattered. The flow was restored when I remembered his pulse; I connected to the spirit of life underneath his ragged breath and realized that it isn’t really the breathing that is the source of unity. The unity comes from the spirit of life – nobility, love, compassion, connection to one another – the breath is just the vehicle that allows us to experience the spirit. Jose’s body may be tired but the spirit of life is strong within him and through his connection to each of you.

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I remember the sense of completeness and acceptance I had after writing that post during a tumultuous time 15 years ago.  I muse on how all we have is the present moment, the present breath. My out-breath is his in-breath, his out-breath is my in-breath.  Each out-breath eventually wafts all across the planet, simultaneously ephemeral and eternal, to permeate all that exists.  Each in-breath holds particles from dinosaurs and butterflies and sinners and saints. I ponder how many breaths have come and gone in 15 years.  I weave my arm through the bed rail to get my phone off the side table. Fifteen years ago, I had a flip phone, and it would have been far from the bedroom, likely downstairs in the office. I can’t recall if it had a calculator function. I calculate 15 breaths x 1440 minutes per day = 21,600 breaths x 365 days = 7,948,800 breaths per year.  So it was approximately 119,232,000 breaths ago that I felt the spirit of life so strong in him. Now his life force dims a bit each day.

The 5 o’clock alarm jolts me out of my trance, and I undertake the routine of administering meds and checking his status.  His feet are a bit cool for the first time.  His hands are not warm, but they are not cool either.  There is slight mottling on his feet and even less in his hands, but his limbs and lips still have color.  He looks comfortable so no need to disturb him by repositioning. His face is relaxed, and I swab his mouth and moisten his lips.  I have a doctor’s appointment at 8:15 and planned to stay up, but it is only 5:13 so I reset the alarm for 6:30 and crawl back into bed.  I snuggle/squish next to him to reclaim my position of 2009, head on chest, finger on pulse.  He continues to breathe quickly, then after a couple of minutes begins a long pause in his breathing.  His first apnea is about 8 seconds, then rapid, even breathing resumes.  After a few more minutes another apnea but this one feels different. I don’t feel any tension of the body struggling to breathe, he just stopped.  I hear a couple of little swishes in his chest and there is no heart sound.  I am immediately incredulous and paralyzed, but autonomically check the time and see the soft red digits projected onto the ceiling…5:19 am.

Breathing in, I dwell in the present moment.  Breathing out, I feel it is a wonderful moment.

— Thich Nhat Hanh