Last time I wrote about holding onto everything I can. Today, I’m going to tell you about letting go. If you want to survive in Chronic Town, you’ve got to be able to do both—at the same time.
When I was feeling a little better a few months ago, when it seemed my chronic sarcoidosis was easing up, I took on new responsibilities. For years, I focused on fighting the disease, showing up as often as I could in my son Andrew’s life, being as good a partner as I could to my husband Jay, and writing with whatever energy I had leftover. But I spent so many months stuck in bed, caught up each day in the daily dramas of pain and sickness. When I finally made it through months of getting a particularly nasty chemotherapy agent called Cytoxan every two weeks and with my illness seeming to be in retreat, I was ready to re-engage with the world. In fact, I was desperate to get involved with something outside my own body.
I started by volunteering in Andrew’s second-grade classroom. I felt like I had missed so much of my son’s life that finding ways a greater presence in his life than a lump lurking in the shadows of my bedroom (as I saw myself, unfairly Jay says) was my first priority. Within a couple of weeks, I went from helping his teacher with weekly spelling tests to leading an advanced reading group twice a week. I soaked up Andrew’s joy in having me there.
When a friend asked me to join the board of a local non-profit organization that supports education, I signed on with just a little hesitation. I would be responsible for co-chairing an enormous fundraiser. It was a pretty significant commitment. But I felt like I had been in stasis for too long. I needed to try to make up for all the time I had lost to sarcoidosis.
I next got the idea to start an after school creative writing club at Andrew’s school. I was feeling a little overwhelmed with all the work the non-profit was requiring on a daily basis. It was much more than I’d anticipated. But writing is my passion. Helping kids claim their voices through writing, empowering them to believe they have something important to say, and getting them comfortable with writing before they have to write term papers was worth a few more volunteer hours each week. And since Andrew would be part of the writing program, the new gig had the added bonus of providing more special time with my son.
Then my health began to fall apart in January. I kept trying to do everything, even when it caused me pain and made me sicker. It felt like if I could just hang in there, keep my grip and put one foot in front of the other, I could outlast the latest disease flare-up. If I let go, I would be saying “uncle” to the sarcoidosis. I would let Andrew down, let these worthy organizations down, let myself down. “Hang on, just hang on,” I told myself.
A couple of weeks ago, I had a moment of clarity. I had to let go. Showing up for board meetings in a cold sweat from the pain or beaten down from the latest treatment wasn’t the point. I was clutching too tightly. I wasn’t helping anyone—including myself—by gutting through these obligations. I talked to Jay and my friends to get their insights. I cried. I got mad. And finally, I resigned from the board. Even though I felt tremendously relieved afterwards, it’s still hard. I worry over my decision and pick at it. I also let go of the reading group. But I decided to hang onto the after-school writing program. School will be out in a few weeks. I can make it.
Living with a chronic illness often feels like walking a tightrope. It’s a balancing act—with constantly changing conditions. The width of the rope, the force of the wind, the slipperiness of the walk are always in flux. What worked yesterday won’t necessarily ferry you across safely today. As I inch my way forward, I am sometimes off-balance from the weight of my hopes and fears and my family’s needs.
I want so much to be fully alive in this life I have. However, there are times to just let go, to trust that I’ll fall not into thin air but onto a solid net.
What about you? Has letting go of something important been the right thing to do?