Facebook and Chronic Town

October 23, 2014 at 8:23 pm (Uncategorized) (, , , )

When you live in Chronic Town, Facebook can be a dangerous site to visit. I’m not talking about Facebook’s experiments on emotions, or its pernicious data tracking. What I mean is that trolling through all your friends’ posts about their busy and beautiful lives can feel gut-wrenching when you live with a chronic or serious illness.

In the past week, I’ve watched as friends and acquaintances on Facebook post photos or updates about long family hikes and century bike rides. There are pictures of gourmet meals prepared for family dinner night, dogs on long walks, and houses all spiffed up for parties. There are announcements about books being published, professional accomplishments, trips being taken, and photos of adorable children engaged in complicated-looking baking or arts and crafts projects.

These are lovely things to hear, and I am truly happy for my friends—and proud of them for the all the activities they are able to undertake and bring their children along on. I am also, dare I say it, more than a teensy bit jealous. Living with a chronic and sometimes debilitating illness means that I’m often not able to do everything I’d like—as a writer, mother, wife, and human being. And it’s painful sometimes to see others being able to live as I would like.

The past few weeks have been particularly difficult, perhaps because I’ve been feeling exhausted, sick, and extra broken for no discernable reason. I’ve been tempted at times to be brutally honest with my Facebook posts, and update everyone on what daily life in Chronic Town consists of some days—barely surviving. Here are some samples:

I made it to the dinner table three nights in a row this week! And I was able to cook a meal once in 14 days. (Attach photo of mediocre-looking meatloaf).

I slept thirteen hours last night, and still had to take a three hour nap. But I was able to drag myself out of bed when Andrew got home from school! (Attach photo of my extraordinary bedhead).

I’m down to getting two chemotherapy treatments a month! It sure is better than getting three, but it still really sucks. (Attach photo of IV bag).

I’m pretty sure my friend Martha will say that I’m comparing my insides to other people’s outsides, that everyone has rotten days (and even spates of them) but not everyone chooses to focus on this when they’re writing little snippets for wide public consumption. And she would be right.

But I think what is unique for those of us in Chronic Town is that we often lose the ability to be able to curate our lives for external consumption. Our daily lives can become so stripped down that we don’t have the option to select rosy, busy scenes for others to see, whilst holding within us and not sharing the sicker, darker moments. I may sound glum, but sometimes all I have are the sicker, darker moments. And at times like these, it can be jarring indeed to scroll through other people’s happy outsides.

I suppose an easy solution would be to give up Facebook. But I’m not going to do that. (In fact, as always, I’ll post a link to this blog entry from my Facebook account.) I like to know what’s going on with friends, family, and acquaintances. I like seeing them thrive. I’m not going to give into the impulses of my inner grinch, that childish piece of myself who feels a sting on bad days when reading about another’s accomplishments. I am, however, going to push myself to be as honest as I can be in my own Facebook posts. Rather than writing nothing on bad days—or only glossing a bad day with a positive spin—I want to try to share where I’m really at with my Facebook friends. For me, it’s a way to connect with a wide array of people from different facets of my life. Why not truly connect with them? Why not bring some of life in Chronic Town to the empire of Facebook?

Permalink Leave a Comment

Vacation From Chronic Town

October 13, 2014 at 3:14 pm (Uncategorized) (, , , , , )

It’s been a while since I’ve written. I took a vacation from Chronic Town. No, I wasn’t cured of my sarcoidosis, but for a few weeks I was healthy enough and lucky enough to be able to pretend I was.

For 30 glorious days, Jay, Andrew, and I were in France. Simply typing those words gives me a rush. We were in France. France! And in France, I did not fall apart. I did not need to seek emergency medical care. I did not get chemo or walk into a doctor’s office. I did not sign HIPPA releases or have to rate my pain on a scale of 1 to 10. I did not refill prescriptions or wait for lab work. For a month, we were able to be nothing more and nothing less than a family on a vacation. Those of you who also live in Chronic Town—those who live with serious or chronic illness—know how this was nothing short of miraculous.

We rode bikes on Ile d’Arz, an island off the coast of Brittany. We ate ice creams cones perched on the Gothic walls of the Papal Palace in Avignon. We drove on the highest road in Europe, a terrifying one-lane squiggle of a pass through the Alps. In Paris we wandered the Marais on a rainy day and scribbled in our journals over cups of chocolate in an old café. Andrew flew an airplane off the Eiffel Tower.

There is that old adage that travel expands your horizons. France blew mine apart. Living with a chronic illness narrows your physical and emotional borders. When you’re going through three different kinds of chemo and have a neurological disease that literally puts you off balance, you end up spending a lot of time in two places—at home and in the doctor’s office. And when you’re not feeling well, your thoughts get winnowed down too. Being in pain takes a lot of energy. It sometimes feels impossible to think about anything other than how much you hurt or how crappy you feel.

Given how patchy my health has been, we went to France with few expectations. “There’s nothing wrong with a mellow trip,” Jay and I told each other many times. We used to plan our trips around how many 20-mile hikes or mountain climbs we could fit into our itinerary, so we tried to psych each other up for a different kind of travel experience. We anticipated that for many days, I would curl up in our hotel room with a good book while Jay and Andrew went off and “did” things. But quite the opposite happened. I felt surprisingly healthy and resilient most days. I was able to do much more than we had dared to hope.

This isn’t to say that I was hiking for 20 miles (though I did pull off one two- hour walk in the stunning Ubaye Valley in the Alps!). We had several “off” days, where we stayed in our rented rooms and I rested. I had bad days, with the same crushing headaches and vertigo I get at home. And every day—just like every day at home—I was tired.
But I was able to edge outside myself. I was lucky to feel well enough to be transported by France to a place beyond the walls of Chronic Town.

Where France took me wasn’t to some profound space of rebirth. It just shook me out of some confining routines and depressing thought patterns. It reminded me of the joys that getting out into the world with my husband and son bring. It re-grounded me. There were days when my toughest choice was to pick which kind of pastry to have for breakfast. This was refreshing and reinvigorating—and a very good reminder that there is a world beyond treatments and IVs, beyond pain and fatigue.

I resolved to bring France back to my life in Chronic Town. Sure, I was due for three treatments and a spate of doctor’s visits. But I was adamant that I was going to push myself to get out more—out of my house and out of my head. But we arrived home to a medical crisis. I was nearly hospitalized because one of my medications was causing some dire side effects. I avoided the hospital, but it was a hard re-entry.

Keeping my post-trip resolutions remains challenging. It’s tough not to feel trapped in Chronic Town. But I’m trying.

What are your solutions for not feeling trapped inside the hardest parts of your life? What helps you break out of your head and your habits?

Permalink 1 Comment