Page from a diary of escape

Escape. In these days of sheltering in place and self isolating, it is so desired it’s become even more of an opiate than usual — and perhaps harder to come by than a drug.

Today, my form of escape was pouring over some doctorate program info I’ve been back burner-ing off and on for a couple years. I’m not sure the work is something I want to put in, or maybe I haven’t found the right program. Or maybe I haven’t nailed down what I want to research for the next half decade. Something with digital activism and writing, but what? None of that mattered today though; wasting time looking at course lists and descriptions was a good escape.

Tonight, after staring my toddler down with the kind of anger-puckered face that comes from being hit by said toddler for the fourth time in five minutes, I blissfully escaped upstairs to my office. Because I’ve been depressed for the last 48 hours and didn’t do any work today, I wasn’t going to do any as I settled into my desk chair. But I didn’t have anywhere else to go. No escape.

I thought about having another good cry, but the emotion wasn’t there.  I swore a bit as I tried to write something, failed to organize my thoughts and thus felt worse. Finally, I opened up a browser and looked for something to read.

What I found was this piece in the Atlantic about feminism and the pandemic.  As I read it, the feeling of existential doom weaving about my feet all day curled up in my lap and made itself deeply at home.  I read that domestic and sexual abuse go up in times like these. Women with children do more work (surprise!!) during health crises like this, and all women don’t recover as quickly or as much as men do after a pandemic. Female  education and careers can be forever stunted by this type of crisis as well.

I read on feeling sad for my sisters around the world, and sad for myself, as a sense of survivor’s guilt joined existential doom on my lap. I still have a job. I don’t need another degree to keep what I have no or find more work in the future. I’m healthy, and so is my family. Even if I DO do more second shift work than the hubs, at least I have a partner to step in when I need him, like tonight. And we can afford to weather this storm for quite a while and have the space to do so.

So what right did I have to feel a sense of dread or sadness or doom, I wondered, reading and kneading tension knots in my neck. Why could I not just focus on the positive? I bounced into a new browser window and tried to find an article about why it’s hard to focus on the positive during moments like this, but there too, I failed. Finally, I quit reading the Atlantic piece. Yet there they were, those triplets of depression. I got away from my naughty child, but this triumvirate was just too much.

For the first time since shit started to get real, I felt like the world awaiting us on the other side of this reality will be so changed that nothing we do now, or are now, will matter.  And so here I am, trying to write it out yet again.  Yeah.

Remember that I said I failed at finding the piece I was looking for, the article that would help me explain why I was having a hard time feeling positive even though I knew I had lots to be positive about? Instead of that one, I found this, a piece from Mental Health America that explores how writing can help people get through tough times.

Yep. Writing. It doesn’t matter that these words aren’t inspiring or profound or even new.  They are all I can do to escape, if even for just a few minutes. This blog is nothing earth-shattering or special or even very well written, but like this post, it’s something I can do to put myself in a different place and a different way. It’s an escape.

What sort of escapes are you turning to?

Remembering Terri Schiavo

Small lights illuminate a star.

Photo by Elias Tigiser on Pexels.com

A brain goes rogue

on December 26, 2004, I experienced a major brain bleed that sent me into a coma and brain surgery. Up until that event, I had been a totally healthy 22-year-old. And then POP, just like that, what I knew of health and normal and independence vanished. Waking up was a two-day process after brain surgery. When I finally had my wits about me, I learned that I’d experienced a stroke, I couldn’t walk and might never live on my own again.

It would take another day for me to get up and test my legs — they worked— and months before I could drive again.  But I did it. In early 2005, I returned to some semblance of a normal life.

At the same time that I was gaining a sense of balance, both physical and metaphorical, another young woman was dealing with her own cerebrovascular event. In 1990, Terri Schiavo, then 26, had a heart attack and collapsed. The loss of oxygen to her brain sent her into a “persistent vegetative state.” For years, her husband, Micheal, had rallied against her parents, insisting that Terri would not want to live in such a state. Her Catholic parents said she was still a human, still their daughter, and they fought his attempts to end her life.

At just 22 when my brain went rogue, I was horrified by Terri’s situation. I watched news updates from my  parents’ couch, torn between siding with  Terri’s parents and her husband.

If it were me, what would I want?

Decisions

In those first days of recovery, before I could drive again, and thus before my independence was re-granted, I decided that I would have wanted to die.

“If I stroke out again,” I’d tell my dad, “you better let me die.”

He’d nod, knowingly. That’s what he wanted for himself, too.  I didn’t talk about it with my very Catholic mom, who I knew viewed every life as sacred, and would do anything in her power to keep me alive. As time went on and follow-up visits persisted, with each new care provider I saw, I would be given paperwork for an advance directive.

“It’s not a bad idea to state what you’d like done in the event of another emergency,” they’d say, handing me the folder. I’d carry it home to throw away, not wanting to think about such heavy decisions.

For the 14 years that Terri had been caught between her parents and her husband’s decisions,  the court in her state of Florida sided with her husband. But in 2005, President George W. Bush signed legislation that allowed Federal courts to have a say. Terri’s feeding tube, the thing keeping her alive, came out.

On March 31, 2005, Terri Schiavo’s decades’ long ordeal was over.

Today

Today marks the 15 year anniversary of  Terri’s death, and I have been thinking about her off and on all day, as I do every year. I didn’t know her and didn’t know of her until my own medical crisis brought hers into my world. But in the past 15 years, her legacy has continued to orbit in my mind.

When I finally returned to life on my own in May of 2005, I ran into a friend I hadn’t seen since before my stroke.

“Mars,” he shouted from across the packed bar I had entered with a friend. “Shit, I can’t believe you’re here. I heard you’d been Terri Schiavo’d or something.”

I assured him that I hadn’t and sent a heart call out to Terri, feeling connected to her despite our differences. I’m so sorry you died, and I lived.

When I moved to Chicago fifteen months later and began volunteering on the stroke and traumatic brain injury floor at the Rehabilitation Institute of Chicago (now the Shirley Ryan Ability Lab), I felt Terri’s presence as I talked, or walked, or sat with patients recovering from their own traumas.

When I studied the therapeutic power of writing during grad school, I felt her presence when researching and writing about disability.

And in my current life and work, I think of Terri every time I write about advance directives, difficult conversations and life support paperwork. I do some writing for a company that has designed a web platform and coach system to help caregivers navigate responsibilities in their role of caring for an adult loved one, so these topics come up a lot.

And outside of my own  bubble, I see a raging debate about who should get care during this time of COVID-19, how those decisions are made and what it does to those who are actually making decisions.

On this anniversary of her death, I think of Terri not as someone who died stripped of dignity, but as someone who we should all think about on occasion. We should all have in place our desires for our own end of life so that no matter how it comes or when, we’re able to have a say in what we want.

Love and light to you, Terri.

 

Finding a flow

Maple trees tapped with hoses to collect sap for makingmaple syrup.

Are you struggling with social distancing or staying put in one place? Is it hard for you to feel connected these days? This might seem crazy, but my life as a work-from-farm educator has taught me one thing, the same thing, about how to get through this.

You need to find your flow. Yep.

As I collected maple sap this morning, I thought about all that has happened in the year since I last did this. My son has started walking, talking and terrorizing the dogs. The farm has gone through its blossom and bust cycle of seeing new green shoots pop from the ground and then months later, explode with seeds. My partner and I added a new home preservation item to our pantry (the maple syrup). My creative writing workshop students have congratulated each other on “finding a better flow” in their papers in every class, in every term.

This all seems like a lot, and not much at all.  But when I think about it all, the metaphors strike me.

Cedar has learned to put one step in front of the other, and now he runs all over. The weeds and flowers and intentional crops came up, lived there lives and then generated new seeds to further their lineage for the following year. Sean and I harvested, consumed and ran out of sap/syrup. And sap is now running, once again. I am working to find my own “flow” as a busy human and a writer.  Even though there has been a lot of chaos and randomness in the last 366 days (heyo, leap year), there have been so many patterns.

It’s not easy to find peace and balance in the midst of a storm because we’re caught up in the swirl of energy. Yet what I sensed while gathering jugs of sap and reflecting on my past year is that any pattern we can create for ourselves right now will be one more tool for getting us through whatever the next 365 days look like.

I’ve seen lots of calendars about  snack patterns,  meal charts, homework or work-from-home setups, and most of them are jokes, memes. I think the humor is great, and it’s another thing that is keeping me smiling. I’m sure I’m late to the game and several articles exist on the importance of establishing a schedule during chaotic times, but I really think that putting together some sort of routine would be helpful for me. It would:

  • provide (at least the illusion of) control over the day
  • create something to look forward to
  • establish clear breaks in the day and clear days
  • lead to a sense of accomplishment

I’ve been working from home for the last three years, and although I miss my friends from the office more than anything else about the office, I’ve recognized in this time that not having a schedule is both freeing and damning. Even though  my schedule now is loose,with a toddler on hand it’s definitely got some structure I can’t avoid.

So no matter what your daily structure might like, shoot for something. If you fail, try again. That could be a way to get through the days.

We can’t control what’s going on with our neighbors or city officials or national government, and we definitely have no control over the virus instilling all this fear. But just like the dandelions or all the babies that will learn to walk over the next few months, we can prepare for the future and look forward to it by following whatever cycles we can in our present lives.

Don’t be a sponge

loki couch

Loki the dog is great at getting stuck in couch potato mode.

In my work as a freelance writer and editor, I’m currently engaged in a project designed to help unpaid caregivers find more time for themselves and make it easier to do the extra work they do in caring for a loved one. Free time is valuable and hard to come by for so many of us, but for working caregivers who deal with concerns for their loved ones while at work and then again when the return home,  it’s an even more fleeting thing.

As I recently reviewed caregiver news online, I stumbled across this article in Stria, “a media platform for the longevity market.” The piece explores data that shows how interdependence develops between older married/partnered couples. It was interesting to me from a working perspective; maybe it’s something I can do some more research on and write about later, I thought. But as I read, the findings struck me as something that’s applicable to me, now.

“We all know couples that are joined-at-the-hip couch potatoes, enjoying nothing more than streaming a hit show while sharing a loaded pizza,” writes author Kevyn Burger. “Equally familiar are the couples who regularly hit the gym together, then treat themselves by splitting a post-workout protein shake.”

I cringed a bit when I read that.

My TV-loving partner is not responsible for my decisions to sit with him and get sucked onto something terrible like Younger or 9-1-1, and yet…I find myself doing this more often than I’d like over the winter. I could be reading, working out or visiting a friend. Instead… I’m couch-potatoing it. I’ve been mad at myself for doing this in the past, but when I read this article and gained confirmation that negative behaviors like this can have a particular bad psychological effect  as one ages (not to mention the extra physical effects of weight gain, in my case) I felt called to action.

The article notes that researchers are finding that this sponge-like tendency can lead to chronic issues in the future, and cites Courtney Polenick, assistant professor of psychiatry and faculty associate at the University of Michigan Institute for Social Research.

“We need to look at the broader picture and gather information about what each person is managing and also what couples jointly manage,” she is quoted as saying. “This study looks at the impact of chronic conditions across a long time frame. We need additional research about how spouses interact to help one another and how couples jointly manage multiple chronic conditions at a daily level.”

Winter is almost over, I hope, and at the very least we have longer days now. When the dogs, the couch, the blankets and the TV beckon, I’ve been working hard to remind myself that there are other things I could be doing to more purposefully engage my brain and my body.  I have yet to use that time for the treadmill, but I am making my way though a few physical books — and I’ve been writing more!

What are you doing to stay healthy, independent and still connected to your partner?