Finding Joy in Difficult Times

Today was my 50th infusion of Tysabri, an immunomodulator that decreases the frequency of MS relapses. The treatment costs close to $15,000 per dose, but fortunately, we don't bear the bulk of that financial burden thanks to my decent health insurance and co-pay assistance programs from the drugmaker (Biogen). If you're going to hit your health insurance out of pocket max, you might as well do it in January, am I right?

Over the last 200 weeks, I've learned to seek out joy on these often difficult infusion days. I always make at least one stop on my trek to/from Northwestern Hospital where I can pause, reflect, and celebrate another four-week cycle in some small, inexpensive way. I think this practice of intentionally seeking joy during difficult times may serve me well, because difficult times are clearly here to stay, at least for a while. Much like my MS, this American disease that led to a second Trump term won't just magically go away, and there are going to be rough times ahead.

But finding joy in difficult times doesn't mean I pretend bad times aren't so bad, or that I ignore or minimize suffering. Far from it. Every fourth Tuesday, my journey to the hospital is a clear-eyed, head-on encounter with my condition and my mortality. My search for joy on these trips isn't a denial of the messy, painful experience of living with MS. Finding joy in the hard times, for me, is about committing to a life lived in full despite the accompanying pain and suffering. Finding joy in the hard times is about insisting on some small moment of joy and pleasure and happiness and hope, right in the God damned middle of real suffering.

In many ways, my infusion days are just mini Ash Wednesdays. On Ash Wednesday, we confront our mortality, but like my trips to the hospital, we don't just dwell there without hope. Our foreheads are marked with ash as a reminder that "... to dust we will return", but the ashes are marked, and the reminder is given in the form of the cross -- the place where God defeated death and the grave. In Christ, there is hope and joy and wholeness and transformation right here, in the muck and dust and grime of this messy, painful, reality.

Fifty times now, I've celebrated doing something hard with a small moment of joy. And you know what? I no longer dread these days. I don't deny they will be hard, but I've accepted that joy can be found in the midst of even the most uncomfortable experience.

And so perhaps that's why Ash Wednesday is important. We face our mortality head-on, and say together, collectively, even here, even now... even in this midst of harsh realities and suffering, even in the reminder that our time here is limited and that each and every one of us will die, we trust that God's love will accompany us. We trust that there is space for hope and joy and life abundant even when world seems to be falling down around us.

I don't know what brings you joy, but I sure enjoyed creating this list. Maybe make your own list tonight, instead of listening to the new-old-guy pop-off. Thinking about joy tonight doesn't mean we won't take his threats or the suffering he will inflict seriously... it just means that even as we endure this together, we affirm that we are beloved and worthy of joy and hope and moments of celebration.

So, here are a few of my favorite spots for a quick moment of joy on my infusion days.

1. Peet's Coffee. Forever my favorite. Great coffee, but more importantly, it reminds me of my dad and the Bay Area. I don't do caffeine (especially on infusion days) but often grab a Peet's decaf Americano to sip during my infusions. (Note: Yes, I see the Museum of Ice Cream on the map, and no, I've never been. Don't get distracted.)

2. Tiny Tapp. Open only during the warm months. After an infusion, on nice days, I'll stroll back to the train along the Riverwalk and stop at Tiny Tapp for a beer. Great views and it's the perfect spot for some people-watching. In fact, on the first warm infusion day of the year, relaxing on the Riverfront in the sun with a beer may be the single most joyous thing a person can do.

   
   

3. Bombay Wraps. Just a chain Indian fast food joint. Nothing particularly special or unique about this spot, but how can you not find delight in a quick, cheap, samosa chaat and a Thumbs Up cola? Joy.

   
   

4. Ohio Street Beach. Always quiet after my midweek, midday infusions, even on bright summer days. Great views from this north-facing beach, so I often enjoy spending a few moments here before heading home. No swimming for this MS patient.

   
   

5. The Billy Goat Tavern. Fast food burgers, chips, no fries. It's super famous, but its location on Lower Michigan still makes me feel like I'm visiting a top-secret hideout. I'll stop in here when I feel like my writing needs a boost -- I like to imagine I'm sitting in Roger Ebert's old seat at the bar.

   
   

6. Chiya Chai. One of my favorite stops on cold days after my infusion. Their chai is pretty good, and casually grabbing a chai on my walk to the train is super satisfying. There's a Riverwalk location too during the warmer months, and they have a stand at the Daly Plaza Chriskindlmarket.

7. Dough Bros. Great spot for a NY slice. Sara and I stopped here a few times together after an infusion. The pizza is good, and somehow eating a slice standing up makes it better.

   
   

8. Monk's Pub. This is more like a once-a-year stop when I'm feeling nostalgic. Monk's was a favorite for lunch or a happy hour gathering when I worked in the neighborhood.

   
   

8. The Riverwalk Deck Chairs. It's always exciting when these come out in the spring. A wonderful place to sit and watch the tour boats float by in the warm Chicago sun. I always feel like I'm cheating, or getting away with something when I sit here. Pure joy.

   
   

   

   
   

9. The Booze Caboose, in Ogilve Transportation Center. A frequent Friday last-minute stop before boarding when I worked downtown. But did you know a train beer tastes infinitely better on a random Tuesday afternoon? Don't wait to celebrate. Visit the Booze Caboose today.