Patients and patience

Three years ago today, I had the open-heart surgery I'd been dreading most of my life. It went smoothly, and I emerged with a stentless ovine aortic valve replacing my original aortic valve and aortic root. As the surgeon said, before they even got me to the cardiac ICU, my heart was fine. It was the split sternum that left me completely vulnerable, in pain, and angry.

Sandy was incredibly supportive in the months that preceded surgery, from the moment my cardiologist told me I needed the procedure, as I attempted to find an alternative, and then through the pre-surgery tests and procedures. It was a difficult time. I had rolling panic attacks for a couple of weeks, and then embarked on a regimen of daily yoga, meditation, walks, guided imagery, new supplements from my naturopath, and countless other efforts to try to reverse the stiffening of my valve. Meanwhile, I was bitter about not biking, having been told not to exert myself since I was at risk of sudden cardiac death. Those words echoed ominously in my head.

Pico was diagnosed with leukemia in the middle of all this, and his illness compounded our feelings of doom. Grumpus, meanwhile, had an unexplained persistent cough and Xrays of his lungs were ambiguous. I was taking care of Pico and Grumpus, and Sandy was taking care of all three of us.

By February 20, when my follow-up echo showed that despite all of my efforts, my valve had considerably worsened since the damning echo in November, I was resigned to having surgery and eager to get it over with. Sandy's job had ended in January, so she was able to help me do all that I needed to do to prepare.

I was in the ICU one night and on the cardiac floor two nights. I knew I'd be completely helpless and I didn't want to be left alone, dependent on nurses responding to my call button, so I'd scheduled caregivers in advance. Sandy stayed with me each night and some part of each day, too. Friends took shifts at other times. They all performed admirably, and I remain incredibly grateful to all of them.

Sandy, of course, took the brunt of it. While I was in surgery, she'd fallen asleep as she was making stew. The smoke alarm didn't wake her up, but she woke when the hospital called to tell her I was out of surgery. She hadn't burned the house down, but she had filled it with smoke. She spent her nights with me, not getting much sleep in the uncomfortable hospital chair, and she spent the days trying to clear smoke out of the house before I returned.

The first month was the hardest, and then slowly and steadily,
things got easier. By July 8, when this picture was taken in
Moses Lake,we were back to our normal life.

She also found me difficult to deal with, I know now. I've read email messages she sent to herself, digital journal entries she dashed off just to let off steam. She resented me and my demands. She thought it was ridiculous that I needed someone in the hospital room with me all the time, and she was tired, coming down with a cold, wanting someone to take care of her. The crankiest email I read was one she wrote when I'd been in the hospital less than 24 hours. I don't know what she expected the experience to be like, but she was already ready for it to be done.

I understand her resentment and her fatigue, and I'm also amused by them. Though I'd have loved for us to have more time when we were both healthy, if one of us had to be ill, we always did better with her being the patient and me being the caregiver. My tendency toward hypervigilance works much better as a caregiver and patient advocate than it does when I'm miserable and helpless. Sandy's willingness to let others handle things worked much better as a patient than when it was her responsibility to manage care.

She may have resented taking care of me, but she kept it to herself. I honestly had no idea, and I usually pick up moods - especially hers. She was there when I needed her, and she rode with my anger, even supported it, when it was clear that it was about the sense of violation that came from having my chest attacked. She bathed me when the process was laborious and I was shivering and scared. She cooked every meal, and put cream in anything she could work it into in order to give me the calories I needed to heal the bone. (I was eating well over 3000 calories a day with very little exercise and not gaining any weight.)

We had very different styles of caregiving, but each got the job done. I never doubted that she would be there when I needed her. Likewise, I think she knew that I'd always be there for her.