What keeps me going

Some golden gratitude for your Black Friday! And three questions that are helping me heal

I have a lot to be thankful for this holiday season. For one thing, my husband, Chris, and I hiked five miles on Wednesday. I was wearing a lightly weighted pack so that I can train to do overnights soon. I got excited, did too much, and ended up something of a mess that evening (sorry honey!) but I’m thankful that I proved I could push myself that hard sans convulsions. I’ve come a long way since I struggled to do the arm machine in cardiac rehab for 10 minutes…and since I could barely plod along on a flat surface for a block or two.

Chronic illness still plods along with me, of course. It’s always there, wherever I go. When I temporarily feel ok, it takes a lot to hold myself back, to keep from leaping forward like I used to. Some days, I could probably get away with surging for a few hours. Other days, I might make it 15 minutes. This is the foreverness of heart failure and a mysterious seizure disorder, apparently. I am grateful about many things, but this newsletter has hopefully shown by now that I am no Pollyanna. I believe there’s nothing worse I could do for my own healing than be falsely positive.

Gabor Maté wrote in When the Body Says No:

“In order to heal, it is essential to gather the strength to think negatively. Negative thinking…is a willingness to consider what is not working. What is not in balance? What have I ignored? What is my body saying no to? Without these questions, the stresses responsible for our lack of balance will remain hidden. Even more fundamentally, not posing those questions is itself a source of stress.”

Here’s an example of what comes up for me when I ask myself these questions.

What isn’t in balance?

My relationship with nature—especially now that I can’t drive me and my dog into the woods several times per week. My expectations of others compared to my actual relationships. The amount of time I spend working on my house vs. relaxing and enjoying my house. Efforts vs. rewards throughout my career. The amount of time I’ve spent mentoring others vs. the amount of time I’ve spent being mentored. Those sorts of things.

What have I ignored?

My body’s subtle cues—until they got so loud and bold that I couldn’t ignore them. My grief over my health crises. The longing to write and create. The fear that I’ll lose even more independence and mobility. My longing for community. Etc., etc.

And that’s just skimming the surface. The real magic comes from going one step further. After stirring up discomfort by journaling about the last two questions, I ask myself:

What fixes it?

Things that help. Clockwise from top left: trying out my new backpacking backpack; the worst picture of me and the best picture of me, with Saint Niki; teamwork; CAKE!; Nosie kisses; S-ICD receiver

What fixes it is spending more time in nature, surrounded by beauty I don’t make or control. What fixes it is cultivating things I only partially control, like hopefully tending my garden. What fixes it is being loved perfectly and completely the way only a vizsla dog can love his person. What fixes it is painstakingly, one day at a time, forging a partnership with my husband. What fixes it is finding a whole series of photos in my iPhone (that I don’t remember taking) of my ICU visitors donning scrubs and eating cheeseburgers in February. Apparently, once I could swallow whole food, all I wanted to do was eat cheeseburgers and I dragged everyone else into it with me. What fixes it is talking about the good and the bad more equally. What fixes it is feeling the lumpy defibrillator under my skin and remembering that if what happened in February happens again, I’ll have much better odds. What fixes it is letting my mask drop sometimes so that people can see around the smiles and the highlighted hair to glimpse the pain and trauma they probably all relate to on some level. What fixes it is getting a new song delivered to my inbox written and recorded by my little brother. What fixes it is trying (badly) to play the ukulele. What fixes it is sitting very quietly with pain and hope, especially in the presence of other humans who are doing the same. What fixes it is establishing a home where I could stay a while. What fixes it is stepping back from a lot of the responsibilities I thought I had because they suddenly don’t matter after everything stopped in February.

In the 20-odd minutes my heart stopped, I lost everything. There are lots of negative repercussions from that, but I’d also like to affirm that the beautiful part of getting to start all over from scratch is that some of the unnecessary bilge of life just got swept away. Forever. So what keeps me going is exactly what almost got me.

The line between life and death is so very thin. My friend Nick and I got into a conversation a while back about whether or not sudden cardiac arrest meets the definition of death. How can it, I initially posited—it’s temporary. But what’s the difference, clinically, between sudden cardiac arrest and sudden cardiac death?

Only that one of them ends up being temporary.

What keeps me going is looking at my reality directly in the face.

I’m thankful to have friends, family, and supporters who will hold my hand firmly as I do so. Thank you all so very much. I hope you had a wonderful Thanksgiving.