Boston Singers' Resource News Bulletin June 18, 2003

This week's News Bulletin features the very talented and courageous Marion Leeds Carroll. Singer, G & S enthusiast, opera director, writer for "The Trumpet Bray" and webdesigner for several New England music sites, Marion has been living with Multiple Sclerosis for the past 15 years. She very openly shares with us her story and the challenges that living and singing with MS bestow.

Marion Leeds Carroll holds degrees from Barnard College and The Mannes College of Music. She has performed and directed opera, Gilbert and Sullivan, Shakespeare, concerts and religious services in New York, New Jersey, Massachusetts and elsewhere. (Her performance and directorial resumes are available at http://leedscarroll.com/resumes/performance.html and http://leedscarroll.com/resumes/direction.html )

Shortly after moving to Massachusetts in 1986, Marion became the editor of the New England Gilbert and Sullivan Society's newsletter, "The Trumpet Bray" (for which she also maintains the web site,
http://www.negass.org/Bray/Trumpet_Bray.html) which includes a comprehensive calendar of G & S events around New England. http://www.negass.org/Pages/Calendar.html. She is also the founder of "Living Room Opera," a community-based opera workshop
http://leedscarroll.com/Workshop.shtml which is currently in hybernation. (Music directors and producers interested in helping to bring this workshop back to life are urged to contact Marion!)

Marion, whose day job is "Web Assistant" to the MIT Libraries http://libraries.mit.edu/, is also the webmistress for Longwood Opera
http://home.earthlink.net/~brumit/index.html among other sites.

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LS: Marion, you have so many talents! Writing, webdesign, performing, directing... Did you go to Barnard for singing?

MLC: I chose Barnard because it had a G&S Society, but my major was nominally English Lit/Writing. When I walked into my writing professor's office one day all apologetic because I hadn't prepared my assignment for that week - because I had been too busy rehearsing for a G&S production - she warned me that I'd have to decide between singing and writing. I laughed - because of course I was going to be a writer!

LS: I love the name "Living Room Opera." How and why did you ever come up with such a great concept? How did you run it?

MLC: As director for MIT G&S, I was surrounded by young, untrained singers. Some of them turned to me for voice lessons, which I was happy to provide, since I had had training and some experience in NY teaching voice. But I felt that these students needed more than vocal technique - they were eager to be cast in lead roles, but they didn't know how to learn music, or how to hold themselves on stage, much less how to act.

So I invited a small group - students from MIT and also adult friends from NEGASS - to meet in my living room, to learn very simple ensembles, and to perform them for each other. My husband accompanied, because I am no pianist, but I was the one who taught the kinds of basic music-learning skills I outline on my workshop music-learning page, http://leedscarroll.com/LRO/Learning.shtml and I also led acting exercises and improvs, based on things I'd learned in workshops run by Boris Goldovsky and H. Wesly Balk.

I first called the class "The Opera Workshop For People Who Don't Sing Opera" - but not only was this far too long a name; some of the class members objected to it, on the grounds that they were singing opera. Well, it was a workshop that met in my living room - so my husband asked, "What's Italian for 'Living Room'?" - and the workshop temporarily became "Opera Lirica del Soggiorno."

When my husband finally got tired of the job of Rehearsal Pianist, the organization regrouped, with Nancy Burstein (the same lady who, as President of NEGASS, had invited me to become the editor of The Trumpet Bray!) as Producer, and Eric Schwarz as Music Director (later succeeded by Juliet Cunningham.) Under Nancy's inspirational guidance, we began rehearsing in larger living rooms than mine, performing in a hall with a real stage, using costumes provided by Janice Dallas, offering a videotape of the dress rehearsal for the performers to view before the final performance, and another tape of the performance to keep as a souvenir - and featuring surtitles and handsome programs instead of the simple translation sheets I'd been typing up. In the interest of publicity, Nancy convinced me to translate the name back into English.

Living Room Opera has been dormant for over a year, in part because Nancy has moved on to other interests, leaving us without a Producer; in part because of changes in my health and other aspects of my life; and in part because I'm not sure whether the workshop really ought to remain what it was. It may be time to seek another type of student.

I'd really like to provide a real opera scenes workshop, or to stage a complete opera, either single-cast, or cast tag-team style to provide opportunities for more singers, for some of the many serious young local performers connected with the local conservatories - there are so few chances for singers to practice and polish their craft! I'd hope to retain the Living-Room aspect - the friendly, non-competitive atmosphere and the relatively low-cost aspect of rehearsing in homes instead of in a school. But to provide such a workshop, I really would need a producer, and a very good music director. If anyone is interested, I hope you'll be in touch to discuss this with me!

LS: The Longwood opera and NEGASS websites are beautiful. How did you get into website design?

MLC: Web design was pure luck. I had been attempting to earn a living as a secretary, which was a mistake all around - I appreciate the talents needed in that field, but I don't have them! But one of the professors I was working for at MIT (James Paduano - thank you, Jim!) had a delightful habit of assigning me tasks he guessed I'd enjoy, and giving me opportunities to learn to do them. (My favorite was the day he walked in with a piece of paper in one hand and a zip disk in the other, and said, "I need you to put a picture onto the computer. Here's the picture, and here's Adobe Illustrator - I'll show you how to use it.")

One day he handed me a course web site to administer, and sent me to a basic HTML class. This is when I started using both Illustrator and HTML on a regular basis, creating lots of silly graphics for my first personal web site and then building a site, and creating the graphics, for my opera workshop.

Then, I took a course through the Harvard Extension school, and started playing with web sites (e.g. the NEGASS site and the Longwood Opera site) to practice my craft - and again, I lucked out. I was directing a play (Twelfth Night - my first Shakespeare!) for the MIT Community Players, and I mentioned to one of my actors that I was looking for an entry-level part-time job building web pages. Well, it turned out his wife was the MIT Libraries web mistress, and she was looking for an entry-level part-time assistant! I interviewed for the job, she liked me, and I've been happily employed there ever since.


LS: I was pleasantly surprised to stumble across the New England Gilbert and Sullivan Society website a couple of years ago. Can you tell us more about NEGASS and its purpose?

MLC: NEGASS was started about 26 years ago as a G&S "appreciation society" by the late Warren Colson. We don't exist in order to mount productions or give concerts in competition with groups like the Sudbury Savoyards (http://www.sudburysavoyards.org/ ) or the Savoyard Light Opera Co. (http://www.savoyardlightopera.org/ ) Instead, we are here to share information about local productions, and about G&S in general. Members get together about 8-10 times each year, sometimes to sing through an opera (without rehearsing it), sometimes to enjoy a videotape on a G&S-related topic (the G&S cartoon-video meeting a few years ago was lots of fun!), to hear a lecture (Bruce Miller's talk on his re-creation of the lost song from HMS Pinafore was a historic occasion) or to take part in a G&S Master Class. We've had performances of some of Gilbert's non-musical plays and some of Sullivan's non-Gilbert music; picnics; fancy-dress parties - all sorts of things that can be enjoyed without months of rehearsal.

But the majority of our members join for the sake of receiving "The Trumpet Bray" ( http://www.negass.org/Bray/Trumpet_Bray.html ), the newsletter I edit, which features reviews of local productions, a calendar listing performances and auditions, and articles of general interest to devoted G&S buffs.


LS; Can anyone join?

MLC: Anyone who loves G&S, or thinks they'd like to get to know something about it, is welcome. You don't have to be able to carry a tune; you don't have to be able to quote all the lyrics or recognize all the jokes - if you're interested, join us! http://www.negass.org.


LS: I'm curious - are there any paid professional G & S performing groups in the New England region these days, or are they all community and school volunteer based?

MLC: I know of at least one community-based group which pays a stipend to its directors, but, to my knowledge, there are no professional local groups which perform only G&S. In fact, several local professional companies which used to perform G&S on a fairly regular basis seem to have removed it from their repertoire - for instance, Boston Academy of Music, a professional opera company which for years has performed one yearly G&S production, has just sent out a flyer announcing a name change to Opera Boston, and a repertoire with no G&S in sight. In fact, the only exclusive professional American G&S company I can think of, off the top of my head, is the New York G&S Players (http://www.nygasp.org/)

LS: Well, we will look forward to Richard Conrad his new Bostonians group bringing back professional G & S productions to downtown Boston.


LS: Where did you gain such an affection for directing Gilbert and Sullivan?

MLC: I fell in love with G&S in my early teens, when an aunt started giving me recordings of the operas. Performing it was my first desire; directing came later.


LS: How did you get into directing?

MLC: I was doing a lot of G&S performing, at Barnard and after. (I was one of the founding members of the NY G&S Players. We used to do THE MIKADO on the streets of Manhattan, in a "Wenger Wagon" - a van that opens up into a stage - lots of fun!) I had taken some acting and directing classes at Barnard, as well, and after college, when I finally started taking voice lessons (yes, I started late!) I joined opera workshops in NYC and elsewhere, and started getting small roles in actual operas.

I have always loved to get up in front of an audience and perform - stage fright has never been a problem for me - but I've also always loved to spend time in rehearsals, working on my part and watching others work on theirs. I find I learn a lot by seeing how others do things. I began to find myself paying as much attention to the way my directors were doing their job as well as to my own part, especially in opera workshops, where learning was the point anyway, and the directors were focusing on teaching skills, not just roles.

I had a friend, an experienced director, who encouraged me in my tendency to critique a director's choices, and interpreted my opinions as directorial instincts. When I found myself, one too many times, thinking, "No! - that's not how it ought to be! - don't you see?!" I finally told myself, "Put your money where your mouth is," and tried directing.

The first try was a failure, and the second wasn't much better, but as I gained confidence and skills - particularly a level of social skill I had lacked - people started turning to me for direction. When I decided it was time to gain the musical skills I lacked (I always did things backwards!) and entered the Mannes College of Music for a second undergrad degree, the head of the summer extension division opera workshop, who was my voice teacher, started to depend on me to direct scenes and one-act operas for her, and I was tapped to be H. Wesley Balk's assistant when he directed an operatic pastiche for the school.

Part of the reason I did so much directing was that I kept getting sick.. Bronchitis three winters in a row, followed by a bout of pleurisy, did cut into my singing! My tendency to become outrageously tired for no reason, and my strange, fleeting little visual and sensory problems, didn't help, but I put them down to stress in my life, and soldiered on, singing when I could, and finding more and more satisfaction in directing as well.


LS: The early signs of MS ...

MLC: Yes, When my husband decided to move to Massachusetts at the end of my years at Mannes I was upset, because it meant I had to turn down a paid position at Mannes as assistant director for the Extension Division Opera Workshop, which I was being tentatively offered. Instead, I moved to MA, where I had no teacher, no contacts, no friends, no information - and was still too far from recovery from pleurisy to do any singing. I had to find work to pay the rent, while my husband studied for a masters' degree, and music was put on hold.

When I finally felt secure enough financially and health-wise to sing for a voice teacher, I made an appointment with the head of the extension division voice faculty at NEC, and after hearing me, she set me up to sing for the head of the NEC voice department itself. And then the left side of my face, from the inside of my mouth to behind my ear, went numb, and stayed that way for six weeks.

To make a long story short - I was diagnosed with Multiple Sclerosis. I was terrified. By the time I'd gotten my diagnosis, six months after that first major symptom, I was in rehearsal for a production of THE MIKADO at MIT. I begged my understudy to learn my role thoroughly in case I fell down, never to walk again, like the people in the MS stories I'd been reading (I didn't fall down - I performed with no mishaps) - and when the MIT Gilbert & Sullivan Players started planning their very first production that fall, I offered to direct, so that I could be involved without risking embarrassment on stage. This temporary fear of performing was what led to my G&S-directing career in MA.
As well as to my position as editor of "The Trumpet Bray."


LS: It is admirable that you do all you do, with such positive determination, while battling the challenges of Multiple Sclerosis. How long has it been since you were you first diagnosed?

MLC: It's been fifteen years since my diagnosis. And as far as battling those challenges - I have a choice: I can sit around stewing in my symptoms (which, until fairly recently, had been quite mild), or I can do something to distract myself. There are times, of course, when I really have no choice. There are days when fatigue, which has been my most constant and most disruptive symptom, leaves me lying flat on my back with my eyes shut for hours, unable to think, much less function. And lately, now that I've moved from the Relapsing-Remitting form of MS (that is, attacks that go away with almost no ill effects) to the Secondary-Progressive phase (that is, I am not having attacks - I'm just becoming steadily more disabled), the challenge is greater - but so is the incentive to do what I still can, while I still can do something.


LS: In addition to the extreme fatigue, has the MS had its effects on other aspects of your singing, as well? For instance - your range and color?

MLC: You understand the fatigue problem!



LS: Yes, I have an Aunt who has lived with MS for 22 years. She has much the same determined spirit as yours. I admire you both so much.

MLC: The fatigue is a major problem; Like any athlete, singers must live in a state of relaxed readiness, like a gazelle calmly drinking from a stream, that can dash off without warning - but when you're too tired to stand up straight, the result can be a combination of tension and weakness that throws the mechanism off-kilter. Growing spasticity is making this worse, of course: I am not capable of standing all the way through an aria any more, without leaning on my cane plus at least one other object (a piano is handy!), and the muscles are actually both tense and weak from neurological damage, not just from fatigue, so just resting doesn't help any more.

So - no roles requiring dancing, or even standing too much. When I played "Mum" in Longwood's production of ALBERT HERRING last spring, I was prepared to ask Scott Brumit if there were any reason Mum wouldn't use a cane - but luckily, he had me sitting in so many scenes that I was able to hide the growing problem. But by the time he asked me to be in the chorus of this spring's Longwood production, SUSANNAH, I had to tell him, "Yes, but only if I can come on as a crotchety little old lady with a cane, who sits for most of the action." (Luckily, by then he had seen me with my cane, and that was exactly what he wanted from me.)

My range hasn't changed - when I'm feeling okay, I can still make it up above the Queen of the Night's F, and down below the F below middle C. There have been changes in color and appropriate tessitura, but I think these have had more to do with age, and with changes in vocal technique, than specifically with my MS. But I have less time to work on music, because - well - when it's tiring to walk across the room, walking into the room with the piano is a project I can't always rev myself up for. And when I get there, I'm less likely to spend my time with the sprightly fioratura I used to favor - I'll stick to slower and more solemn pieces - but this has as much to do with my mood as with my health.

My big fear related to MS and singing has to do with articulation. When I'm tired, I get very mush-mouthed. The muscles of my mouth actually feel stiff. I'd say, "well, that's just tiredness, and can happen to anyone" - except that I've found that other things I used to think of as "just something that happens when I'm tired" - for instance, clumsiness and weakness in my arms - have turned into permanent spasticity. The day will come when I'm not able to speak or sing clearly. The day will probably come when I have trouble swallowing as well - at which point, even dependably producing a pitch will probably become problematic. This is why I feel I have to do whatever I can, while I still can!

LS: You are incredibly brave and an inspiration to all of us who complain about life's "small stuff." Thank you for reminding ALL of us to do whatever we can while we can!


LS: Have you found any specific health regimes or medicines helpful to maintain your health and singing?

MLC: Exercise and stretches! - stiffness and weakness are my big problems, and a stiff weak body does not lead to a healthy voice. Rest! -- lying down flat is not only helpful when I'm tired; it gives my spine a chance to straighten out, and better posture means better singing. Very fortunately, ginkgo biloba helps control MS-related fatigue. At my stage, there are no medications to control my other symptoms (e.g. spasticity) that wouldn't cause side effects that would negate their value - so I only take medications which, I hope, will slow my progression. (That's plenty!)


LS: Can you give us more information about Multiple Sclerosis and point us to some websites with more information?

MLC: MS is an autoimmune disease of unknown cause (although - let me hasten to assure you - it is not contagious!), in which the immune system attacks myelin, a material which coats the nerves of the central and autonomic nervous systems, ultimately leaving multiple "sclera" - scars - on the lining of the nerves. Much as sap rises directly under the bark of a tree, nerves transmit their electrical impulses directly beneath that insulating myelin sheath. When the sheath is damaged, "short circuits" occur, and the signal is broken or scrambled.
We're talking about the entire brain and spine here, so the results of this damage are varied and unpredictable, and differ for each patient, and even from day to day in the same patient. Symptoms include sensory (touch, kinesthesia or vision), motor, and cognitive (including emotional) problems - what have I left out? - and affect all parts of the body and mind. On top of this, recent studies have shown that not just the nerves, but the brain itself, is affected: it shrinks.

The most common course of the disease is the one I have: starting with Relapsing-Remitting, and evolving after 10-15 years into Secondary Progressive. A smaller percentage of people start out with a Primary Progressive course: from the beginning, every symptom is permanent, and disability is cumulative. The dramatic and sudden downhill course experienced by the late cellist Jacqueline du Pre is fortunately very rare: people don't usually die from MS. We live a relatively normal life span - we just don't live a normal life!

For more information on this complicated illness, and opportunities to donate to helpful organizations, visit the web site of the NATIONAL MULTIPLE SCLEROSIS SOCIETY (http://www.nmss.org/index) or the NEW ENGLAND CHAPTER: http://www.msnewengland.org/ Also:

- MS ASSOCIATION OF AMERICA (http://www.msaa.com/) offers help to MS patients and information to people who would like to help.

--MSWATCH web site ( http://www.mswatch.com/mswatch ), sponsored by the makers of Copaxone, one of the four approved medications available to slow the course of MS, requires registration to use, but is very helpful and informative. Similar sites provided by the other three manufacturers include http://www.avonex.com/ (Avonex), http://www.betaseron.com/ (Betaseron) , and http://www.mslifelines.com/re_index.cfm (Rebif).

-- MS SUCKS web site (http://multiplesclerosissucks.com/ ) is one man's honest, informative, irreverent, often humorous, and very intelligent response to living with MS
.
--Finally, THE BOSTON CURE PROJECT ( http://www.bostoncure.org/) is a local group which is gathering information to share with researchers.


LS: Yes, you are planning a benefit concert for Boston Cure and have asked for BSR members' help. How is that going?

MLC: I've gotten some great responses to your notices to the BSR membership. Thanks so much for puffing my concert!
I have proposed a Benefit concert for this local organization, and will be meeting with them in mid-June to discuss plans and ideas. Performance date, hopefully, will be sometime in the early - mid fall. Those interested in participating in this event, either as an as advisor, organizer, general resource person, or performer, should please contact me: marion@leedscarroll.com. This is still in the brainstorming stage, so I value anyone's input: More information and questions that need to be answered can be found at:
http://www.bostoncure.org/events/eventpages/20031026_sing_to_cure.php

[October Update: Thanks again! - I had a wonderful response to your original announcement, and the concert is ready for publicity. See the official Boston Cure Project Concert page at: http://www.bostoncure.org/events/eventpages/20031026_sing_to_cure.php

The concert is set for October 26 from 3-5 PM at the Pleasant Street Congregational Church http://www.pleasantstreetchurch.org/ , 75 Pleasant Street, Arlington,MA. We have plenty of singers and accompanists Information on donations for this event is available at http://leedscarroll.com/boston-cure/sponsor-a-singer.html
if you'd like to just help with fundraising without attending or taking part. ]

LS: Thank you, again, Marion, for your courage and honesty. We so appreciate the effort you've put into our singing community, your life, and this article. May your greatness continue to shine above the physical limitations of MS. Please keep us posted on the Boston Cure project as well as any other benefits to which we can lend support.


For More information about Marion Leeds Carroll or to join her Boston Cure benefit concert: marion@leedscarroll.com

For More information about Multiple Sclerosis:
HEALTHOPEDIA.COM http://www.healthopedia.com/multiple-sclerosis/
NATIONAL MULTIPLE SCLEROSIS SOCIETY (http://www.nmss.org/index)
NEW ENGLAND CHAPTER: http://www.msnewengland.org/
MS ASSOCIATION OF AMERICA(http://www.msaa.com/
MSWATCH http://www.mswatch.com/mswatch
MS SUCKS web site http://multiplesclerosissucks.com
THE BOSTON CURE PROJECT http://www.bostoncure.org)