A conversation at our house recently:
“So when you think of things that the illness has cost me, things that were a big part of my identity, things that I loved to do, what’s the first thing that comes to mind?”
“That’s easy: Control. I mean, I don’t mean that in a negative way – you are very detail-oriented, just as much as I have my head in the clouds, and I know it’s been really hard for you not to be able to have your hands in things, because you enjoy managing every aspect of a process and you’re very particular about how things should be done.”
I looked over my glasses at Chimp. “Because I was going to say singing,” I said.
“Oh. That too. Your singing is the one thing that would make me cry.”
“Nice attempt at a save.”
I don’t remember a time when I didn’t sing. I was the character in ABBA’s “Thank You for the Music”: Mother says I was a dancer before I could walk/
She says I began to sing long before I could talk.
Dance lessons I took, but singing I just did, standing on my bed, choreographing show-stopping numbers in which I starred, backed by an imaginary cast of thousands, to my day’s choice of record on my Fisher-Price player. My main aspiration was rock star…possibly actress. I remember watching Aileen Quinn’s performance in Annie in the cinema and thinking, with the egotistic boldness of childhood, “I could do that. I want to do that.”
But of course I was just a kid, and not a pro: In elementary school, I once blanked on a piano piece during a recital, and another year I flubbed a big line in my lead in a church musical because I’d been concentrating so hard on the line before it. The piano debacle reduced me to helpless tears afterwards – I didn’t love piano and my failure was just the cherry on the sundae of my struggle with its endless frustrations – but the line-flubbing I took in stride and just kept on going, because I did love singing and acting.
My mother, in these years, was mostly endlessly patient with me constantly singing along with the radio when we were in the car – including from beginning to end on at least one 500-mile trip to Indiana, as I frequently punched the buttons to find the best selection of the moment. From time to time I did get asked to turn it down because of the occasional “headache,” but not often. My long-suffering mom, by the way, had been in band, and wouldn’t I like to be in band too? No, sorry Mom, nothing duller to my childhood sensibilities than being one of a hundred people behind instruments – more egotistic boldness here – I wanted to be center stage.
I had been in the school choir for four years by the end of 8th grade, but I was still only at best a very average singer. My high school choir director – Bob Stamback – was legendary in our state for a program beyond the average high school level. Usually, at the end of 8th grade, you auditioned and were placed in one of the two main ensembles: the women’s choir or the mixed-voice choir. But the year I was a rising freshman, there was an unusually large number of freshman women, too many to incorporate into the high school ensembles successfully. Because of that, Mr. Stamback announced we were to have a freshman women’s ensemble. And this decision changed my life.
“Uncle Bob” on a choir festival trip to Tennessee.
There were twenty of us. If you’ve never sung in a choir, when there are twenty voices, there’s nowhere to hide. This started out slightly terrifying, as Mr. Stamback was generally good-humored but serious about our work and rather intimidating, despite being affectionately known to the choir kids as both Uncle Bob and Homer Simpson (see the photo at right and tell me you wouldn’t have coined the same nickname). Once I got comfortable with the fact that he was going to call on us individually all the time, I realized that beyond our ensemble work, we were effectively getting a group voice lesson every day. And at the audition at the end of the year, I actually could sing pretty respectably – and landed a coveted spot in the mixed-voice choir for my sophomore year.
I loved the hour a day I got to spend there, because singing in that group, with the expectations he placed on us, could be massively exhilarating. My favorite piece we did in that chorale was John Rutter’s “Gloria” (a nice rendition of it below) – I remember coming to the end of its 20-minute length in one late rehearsal and sort of “coming to,” realizing my arms were shaking, there was sweat pouring down my back, and I had goosebumps all over – and feeling deliriously happy. There is something very special about that transcendent aspect of singing in a choir, about the end result of putting in the many hours of rehearsal to get each of the hundreds of details of a piece exactly right, and when every bit is perfected, there’s a magic to the unity of the singers’ cooperation that is beyond description. It’s a wonderful thing to feel like you belong in the midst of that and are contributing to it.
Individually, learning to sing from Mr. Stamback is truly one of the greatest gifts I was ever given. Gaining a foothold on that skill boosted my self-confidence, allowed me to begin to match up my abilities to my childhood aspirations and self-concept, and made me feel like I was actually somewhat talented. All of that was enormously meaningful to me. And I just got so much joy out of it, the joy you get out of becoming proficient in something to the point that it starts to become natural and almost effortless.
I used that ability every chance I got. I sang in choir; I sang for myself; I learned to play enough guitar so I could open more performance opportunities that way; I kicked ass at karaoke, and my childhood aspirations stayed alive long enough that I took my singing ability to NYU, where it made me a double threat as a drama major.
But even though I sang every day for many years, it wasn’t until I got sick in 2004 – and suddenly couldn’t – that I realized how important it was to me. When I first fell ill, I couldn’t sing because I didn’t have either the energy or the breath. Singing, I found, was one of those things that would eat up my energy very quickly. It takes a lot of breath to sing well, and if I tried, I would find myself gasping for air and the edges of my vision beginning to dim as my brain became gradually shortchanged on oxygen.
As I improved during 2005, I regained the ability to sing a bit, and for a while it was a barometer of how I was doing with the illness. I’d get a little worse and lose it, get a little better and get it back. But at some point – I think my summer 2006 crash, the one that stopped me commuting to the office – I lost it for good, at least thus far. Once I became bedridden at the end of 2007, another impediment to singing emerged – muscle wasting. If you can’t move around, all your muscles wither away, and that includes your diaphragm, the support of which is absolutely essential for singing.
Because I’m so out of practice and have no diaphragmatic support, I can wheeze out a creaky version of “Happy Birthday,” but that’s about it. I can only hit about an octave’s worth of notes in the bottom to middle of my range. Anything I might essay on the high end is just a shrieky, thin, unsupported whistle.
I said that I didn’t realize how important singing was to me until I couldn’t do it. This was for a couple reasons. The first is more prosaic and was more important when I was still working: Caffeine and I don’t get along, so my usual method of waking up in the morning was singing along to loud music while driving to work.
The other is a little tougher to explain. Singing was not just a creative outlet for me, but a way to deal with stress and emotions – and it was that aspect of it that I wasn’t fully aware of until I didn’t have it any more. I sang to psych myself up for the day, to relax myself on the way home, to deal with boredom, to celebrate when I was feeling joyful, to wallow in depressing music when I was feeling sad, to boost my confidence on difficult days, to sing harmonies to anything and everything because it made me feel like I was putting something beautiful and unique into the world, and to vent along with Elvis Costello when I was pissed off. And that, really, is only the beginning of how I used it. Pretty much anything I needed to deal with, I dealt with partially through singing as catharsis. And I can’t do any of that now.
Truthfully, I can barely even listen to music these days – it’s just one of many things that’s a major energy eater and difficult because of my cognitive dysfunction. When I do, the need to sing harmonies is still overwhelmingly there, but I can’t do it – and not being able to do it, having to just listen and not fulfill that need, is almost physically painful. There’s a profound, oppressive sense of loss. I feel cheated, feel wronged, feel like I’ve had something I earned and was entitled to cruelly stolen from me. I still love music, but because it’s painful to listen to and painful to have to not sing, I’m kept away from it except for at moments when I feel like I absolutely must hear a particular piece, and then I listen at low volume in snatches of a song or maybe two at a time. After decades of collecting music, I’ve lost track of the catalog of many artists I deeply love, because I can’t listen to an album all the way through.
Getting this back would make my life much richer, but it’s so far along the continuum of recovery that I despair of ever reaching that point. I’d need both my cardiac output and my muscle tone to substantially improve to get there. I would probably be well enough to work before I would be well enough to sing again, and getting from 98% bedridden to that point seems profoundly unlikely.
Sadly, I haven’t really found something to replace singing, and at this late date, I don’t expect I will. It was so much a part of my life for so long, and I used it in so many situations, that there just isn’t anything that’s analogous or as universally useful to me. Writing is probably closest, and perhaps the thing that I’ve been doing to deal with life second longest, but as helpful as it can be to put fingers to keyboard, it badly lacks the transcendent beauty of being able to raise my voice and thereby put my cares thoroughly aside.
No Poster Girl 
Oh Jocelyn that is heartbreaking. So many people don’t realize how much of things this stupid illness robs us of. I can unfortunately relate. I was actually listening to some of my old recordings on sings nap last night. For me as we’ll it was one of the first things to go. I’ve been in wheelchair and bed ridden and housebound for 2.5 years. As soon as I get an ounce of energy I pick up my guitar for a few minutes which is almost never, and pay for it the next few days Still can’t sing but you should see my bucket lis of all the songs I need to learn if I ever snap out of this. Lol I had never thought about my diaphragm, wasting away like the rest of me. That’s scary. At least I get to listen to my almost 16 year old daughter sing with the voice of an angel. She is operatic as a I was always more rock. Just wanted to let you know that I completely understand and pray from the bottom of my heart that you can sing again someday! Hugs. Nat
Thanks so much, Nat. I’m terribly sorry to hear music is among your losses too. You’re right, that’s part of what makes our illness so hard to explain – the breadth of the effects it causes is so immense that it’s almost impossible to summarize. I’m glad you get to hear your daughter sing – that would be a pure delight.
This is heartbreaking. What a terrible loss. I would have guessed “listening to music,” as your love of this art is obvious, even with your cats’ names.
I understand singing and music encompassing your whole life, entire days from start to finish.
I grew up in a musical household, with music, mostly classical, but folk and a few other genres played; the musical background was constant and a major part of our lives. We sang, too, wiith my talented mother playing the piano and singing, and my sister singing with her beautiful voice. Lots of harmonizing went on.
I miss that in my life, and I also miss listening to music, as for the last four years or so, it has given me headaches. So I listen to a cd once in awhile or to one clip on You Tube.
So much of what this disease takes away is not listed in the “symptoms” list nor publicly known.
Yet this is a life-altering loss. It has to be recognized.
Perhaps some successful treatments will be found that will allow you to enjoy music.
Precisely, Kathy. Awful to hear that it’s one of the things the illness has robbed you of too. I’ve been trying to answer the questions for the FDA meeting (that’s what I’ve been spending my energy on, and why I’ve been so slow on getting back to these comments), and I find them totally insufficient in terms of explaining the real impact on the illness, and the near-uselessness (in the greater scheme of things) of the treatment options we have.
It was never a chore to hear to sing on road trips, at camp, on stage in a Lake Braddock High School performance… Do you remember that your lovely piano teacher suggested that your summer lessons include songs that you could play and sing? How clever was she? I remember your karaoke performances at the A.R.F (Animal Rescue Fund) benefit in Indiana and at a night club in Cancun. On each occasion, I was enormously proud or your ability to exude confidence, joy and attitude. Have I told you lately that I love you? Mom
Thanks, Mom. I’m very grateful for your loving support. Now that you say that, I remember that one year my recital piece was “The Dainty Hippopotamus,” which I got to sing and play.
Ah, I’ve been hoping you’d write about singing. I guess I first found your blog over a year ago, you mentioned singing and I asked you about it. I never really knew anyone who had actually studied singing, and my friends who had learned seemed not to care and never talked about it. I had one friend who could easily sing well into the whistle range beautifully, I cried the first time I heard her, but she had no interest in taking lessons or learning arias!
I just passed the one year anniversary of my very first singing lesson. I don’t know what took me so long. My parents never encouraged it. When they made us choose between band and choir, I chose band easily, I loved singing and dancing, but I didn’t like to be the center of attention. I’d much rather blend in. My Grandma introduced me to the Annie movie. I watched it over and over, I always sang and danced by myself in front of the tv, to all kinds of things. I knew I loved singing more than anything (like more than dancing, drawing, and T-ball) but unfortunately it never occurred to me that I could preform.
I found a wonderful teaching online who would come to my house and was in my price range. (Good thing about living in LA) After my first lesson, it was one of the happiest days of my life. I’ve had about 15 lessons since then. I can’t do two weeks in a row, and I can’t really practice much in between lessons or I’ll crash. Also my throat get sore very easily. I haven’t had a problem with my throat in awhile but this year it’s been almost constantly sore, but it’s worth it.
My memory is fuzzy but I think I scheduled my first lesson very soon after you responded to my comment where I asked you about singing. So, thank you for inspiring me! I wish I could sing for hours every day like I used to, especially now that I know how to really do it (feeling pretty confidant after a year of irregular lessons) I also wish I had sang in the choir in high school, or the voice lessons in college weren’t full, but oh well. Better late than never. Better to have loved and loss, etc. And I don’t want to belittle my time in high school band, it was so wonderful.
My last Cheney visit made me hopeful about recovering some energy and cardiac output with Nasal VIP. I’m not getting my hopes up again like I did with stem cells. (Thought about trying them for a long time, until eventually he stopped recommending it, so I never did) But, I have a little hope. It’s possible.
I can imagine your pain. It can’t be overestimated. Singing is like an addiction I was born with. I used to hate singing in front of people, but if a song came on the radio I liked, I could not stop myself from singing along no matter who was in the car.
I hope something will come along, if not nasal vip, something else, and you’ll get to sing again. Every day. Thanks for sharing.
Alison, that’s wonderful that you’ve been able to bring voice lessons into your life! Even with the difficulty of not being able to practice, it must be so enjoyable to learn something you’ve longed to do for ages.
I’m right there with you on the nasal VIP, both in being somewhat hopeful and in not getting my hopes up. I think I will let some other patients try it first and see if anyone ends up in a ditch. But it would be phenomenal if it gave me enough cardiopulmonary function back to sing.
I know that I can’t sing for toffee but I too use it as barometer of the waxes and wanes of this stupid illness, not being able to keep up with the words, not being too breathless to finish a line … It sucks. That’s the worst of it, the loss of self. 🙂
Yes! So many things we lose contributed to our identity…it is hard to know who you are anymore when you don’t have the ability to do the things you love. I think the medical field would probably see the loss of singing as minor, but those of us who loved it know it is major. 😉
I am so sorry for your loss, Jocelyn. This article perfectly describes what M.E. does to us. This loss of your singing voice is not the loss of an activity; it is a loss of a big part of who you are. Of course you can’t replace it. It is a unique part of your identity. I hope someday you will regain your singing voice and be your full self again. I think most people with M.E. have a loss like yours.
Mine was the loss of my ability to create art–both visual art and art with words. M.E. has taken that away from me. For a long time, when I had a better day, I would try, but it never worked. That transcendent feeling you described when you were lost in signing with the choir is the same feeling I used to get when I was writing or painting or drawing. That is my loss. It is a loss of who I was, leaving a gaping hole in my identity.
Thank you for expressing so well how this illness devastates our lives. I agree with idiosyncratic eye (above). This is the worst of it; it is the loss of self.
You hit the nail on the head there, Patricia. Who are we if we can’t do the things we love anymore? The illness floods in and takes over our identity, and I don’t think any of us enjoy that..
I’m so sorry to hear you’ve lost the ability to create art. That’s another area of self-expression useful for a lot of moods. I remember Jodi of A Hummingbird’s Guide talking about getting out her colored pencils one day and finding herself exhausted from the motion of trying to just color.
I can really relate to your sense of loss. My way of relating to myself & dealing with difficult emotions was thrpugh ballet & dance. I find it very painful to watch ballet or dance & have struggled to find a new way of experiencing myaelf in the world in a much less physically demanding way. Drawing & painting is becoming a new way to do this but I deeply feel the loss of the joy I experienced when my body felt strong, supple & free during dancing. Em x
Em, I saw your lovely paintings! I’m so glad you’ve been able to start doing that. Our lives become such poverty from our losses to the illness, and it’s wonderful that you’ve found something enriching to add to your days.
I feel the same about horse riding. It’s horrid to lose such a big part of one’s life. xxxx
I’m the same. Being a singer was a huge part of my identity, as well as a source of stress relief, emotional release, and fulfillment. I’ve tried a couple of times to sing a little once I had improved enough, but it was WAY too much for my body to handle still. Plus, like you, I found that I no longer have the range or breath support to get my voice to cooperate. I miss it terribly. In being stuck bed ridden for so long, I fear losing my singing voice far more than losing muscles in my legs.
Much sympathy. I’m so sorry this illness has taken that from you. It’s so unfair.
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Being part of a choir again is top of my list of things I’d love to do again if I am ever well enough (along with riding a bike). You just don’t realise how important these things are until they are taken away from you.
I used to play the trumpet in my teens/early twenties and your description of coming back to earth with a bump at the end of a performance is exactly how it used to feel. At times it was almost an out of body experience, I would be so caught up in the music I would forget that I was one of the people making it. After relapsing, I kept my trumpet on display as an incentive to get back to playing but after several years I could no longer bear to look at it anymore. It takes such precise muscle control and development to play brass that even if I could play again with so much muscle wastage I could never get back to the same standard.
Thanks for your honesty on such a painful subject.
Thanks for coming by to commiserate, DMDS. Trumpet would be immensely challenging, definitely even more so than singing. It would be nice to be even able to do it terribly – better than not at all.
I miss my bike, too! It’s sitting down in the garage. I last took it for a spin in early fall of 2007. I took it to the bike shop and got it tuned up right before I started the downhill slide that landed me bedridden. Impeccable timing.
I adored singing all my life, I sang my brothers and sisters to sleep every night with Kriss Kristofferson songs, and was often asked by my mom to sing. I sang constantly on car rides too. I was in church choir and took guitar. I had a boyfriend who played guitar and we would sing together at variey concerts, around campfires with others etc. I adored it and was told I was a good singer. After I became ill I tried taking singing lessons to better myself and found out the drain it took on me. I couldn’t contine as it would leave me bedridden for days and with severe air hunger. Now, on good days, I sing to myself as I sweep a bit or sing in the shower or car. My voice is terrible, my current boyfriends puts up with it though, which is nice. I tried doing two youtube videos awhile back of my singing “Non, Je ne regrete pas” and “The Night the Lights went out in Gergia. I redid them over and over and ended up bedridden and starving for oxyygen for weeks. So, yep, definitly somethiing I miss and I feel for you deeply.
My sympathies, Denise. Isn’t it the way that we try and we try to hold onto those little bits of normalcy, sometimes to our great detriment? I’m sorry to hear it ended badly for you, but did you get the videos finished successfully in the end?
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