In Concert

I went to a concert on Saturday night. I know, right? Given how sick I have been, and how much I have struggled after outings, a concert sounds pretty crazy. In fact, I haven’t been to a concert in many years.

My first date with my husband was the Cranberries concert at The Tower Theater in 1994. We only dated two months before I got sick, but in that time we saw the Soup Dragons, Youssou N’Dour, and Stone Temple Pilots (give me a break, it was 1994!!!). Over the years, we’ve purchased and wasted tickets to more concerts than I can count. I’ve made it to a few, but more often than not I’ve been too sick to go. Concerts are a nightmare to people with CFS: it’s at night (sometimes very late); it’s loud; it’s crowded. Sensory overload is part of the package, on top of the physical effort of just getting there. Even on the few occasions I was able to make it to a show, I had to deal with terrible relapses afterwards. I always ended up wondering if a two hour concert was worth two or three weeks of recovery. After awhile, I gave up trying.

So why now? I am a huge fan of the Carolina Chocolate Drops, and seeing them in concert has been on my “Bucket List” for several years. This was more to me than just another concert. I love – no, LOVE – their music and what they are doing as a band. The Chocolate Drops are rescuing black string band and fiddle music and updating it for a new generation. This music is pure; the happy songs are joyful, and the sad songs are honest. These are songs about life: life is hard but take joy where you can find it, even in something as simple as cornbread and butter beans. Their music makes me think of family, leisurely afternoons on the porch, simple food, laughter, and sweet tea. The only Southern things about me are the fact that I was born in Arkansas and my years-long search for the perfect biscuit recipe, but this music touches my heart in a way I can’t fully express. Watch a few of their performances (try this one, this one and this one), and see if you don’t feel the same.

Still, my ability to go to a concert is a crapshoot at best and carries the steep price of weeks of illness afterwards. Seeing the Chocolate Drops in concert always seemed out of reach because their concerts were in the city, or had an opening act, or were too far away. Then an appearance in Reading, Pennsylvania showed up on their schedule and I started to plan. The distance was doable; there was no opening act; the theater is small; there was wheelchair seating. I cleared the decks for preemptive rest, giving up three other events in October to save the energy for this. The week prior to the concert, I restrained myself from doing just about everything. Even so, I felt shaky and weak on the day of the concert and probably would have stayed home if it was anyone besides the Chocolate Drops.

We sat in the first row, which meant we could see how the band members coordinated with each other throughout the concert. This is a talented group of musicians, each of them playing multiple instruments. They played a number of songs that are not on any of their albums, and talked about the history of the music they play – black string band, Piedmont fiddling, and the minstrel legacy. I was mesmerized by the bones, and despite a demonstration I still don’t understand how they get such complicated sounds just from knocking them together. The entire evening was magical from start to finish. My Mom, mindful of my limitations, pointed out we could leave early but the only way to get me to do that would have been to drag me out.

And then it happened, as I figured it would. During their performance of Leaving Eden, the magnitude of the experience crashed over me like a wave. That song makes me tear up on a good day: “I can’t tell my daughters all the things I’m scared of. But I am not afraid of that bright glory up above. Dying’s just another way to leave the ones you love.” I thought about the sacrifices I had made just to be there and share this experience with my family. I thought about the price I would pay afterwards. I had fantasized about this concert during long days of being bedridden, with no assurance that I would be able to fulfill this dream. I would have wept right there in the theater, but I bit back the tears so that my husband and parents would not be concerned. I let that music pass over me and through me. Sometimes, especially during the worst times, I am afraid. I feel like CFS will never get better, there will never be a treatment, and every crash could be my last: the one from which I will never recover. Those are long and lonely hours, and it is easy (perhaps natural) to forget that everyone at some point experiences the same level of suffering. This music reminds me that I am not alone; it tells me that I can carry on. This is soul-full music.

For a few hours on Saturday, I was paroled from the prison of my illness. I laughed, sang, clapped, and tapped my feet to some of my favorite songs. I felt triumphant in overcoming my disability and finding a way to achieve this dream. Thank you, Carolina Chocolate Drops, for your music and for sharing that moment with me.



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5 Responses to In Concert

  1. Joe Landson says:

    Music is the only “therapy” that has consistently helped me at all. Though I don’t even risk concerts, just putting on headphones and checking out for a few hours soothes the savage beast of overexertion. I recommend the O Brother Where Art Thou soundtrack, one of my favorites at the moment.

  2. Sue Jackson says:

    I am so happy for you, that you were able to go to the concert! I haven’t been to one in years, either. besides all the reasons you mentioned, it seems like everyone stands now in all but the smallest venues. I hadn’t thought of using a wheelchair and sitting up front.

    Your lines about being afraid really resonated with me – I am going through a bad period and feeling all of the things you described.

    So glad you got to do this!! I hope the payback isn’t too bad.


    Live with CFS

    • Jennie Spotila says:

      Even standing venues have to off disabled accommodations. It’s worth borrowing/renting a wheelchair for events like that. This theater had a wheelchair row with companion seating so I could pull my wheelchair right into place next to David!

  3. Belated, but wanted to say how much I appreciated this post. We with CFS grow so accustomed to watching the “normal” world pass by and feeling abnormal and alone, it is rare and valuable to read something that mirrors my own experiences so closely. Right down to the unused tickets — that’s always a killer. Glad to hear you made it to the show and got to enjoy yourself.

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