How can I keep from singing?

Our choir (Aurora Chorus) sang two concerts last week, titled Grace Before Sleep. We’ve been preparing for this since September with weekly rehearsals, extra section rehearsals, a weekend retreat, endless memorizing and learning foreign language diction (Norwegian, Hebrew, Swahili, Spanish). It is a huge commitment, this choir gig – a commitment of time, energy, love. I know what I’ve signed up for; I know it’s challenging and exhausting; I know it’s a test of my mettle.

That's me, center stage, singing Mata del Anima Sola. 

I've written about the courage I need to muster to participate in these concerts. This one was no different. Singing a solo and accompanying a song on guitar in both shows required me to make my way to the front of the stage and back (with assistance) four times. I feel very conspicuous during this transition time, cane in one hand, gripping a sister singer with the other, trudging slowly and clumsily. So it did not help that I miscalculated and went upstage one song too early! When I realized what I'd done, it didn't make sense to struggle back to my seat and then move up again, so I sat there center stage through one whole song! Awkward!

And in spite of all the difficulty, I sang and played well, the audience seemed to like it, and it felt good to be able to do, once again, the thing I love so dearly. I am supported so completely by the other choir members, not just during my solo, but all term, whether it's negotiating the stairs in our rehearsal room or schlepping my guitar, there is always a hand or two at the ready to help.

It was not an easy day, though. The venue we've been using is wonderful for acoustics and aesthetics, but it sucks for accessibility - especially, like on this day, when one or both of the elevators are out of service and I have no choice but to use the stairs (with help, of course).

I've had to make a hard decision to not sing in this venue any more, after our March concert. It will break my heart to not participate, but it adds too much stress and physical strain to deal with flights of stairs in addition to the demands of stage movements and, well, just getting there! It's also not very good will for our audience members -- had I been attending this concert and been forced to use the stairs, I don't think I would have stayed. I have been in dialog with the chorus coordinators, and they get it and are taking steps to improve the situation. It has taken longer than it should have, however -- this is an issue that has come up over and over in this venue.

And it was a battle I did not want to take on for Grace Before Sleep. 

Photos by Kathryn Kendall.

Some etiquette and common sense...

...regarding people with mobility devices:

Sometimes I wish I could engage a protective bubble around my body when I’m in a crowd. It is a vulnerable feeling when one has balance issues and the potential for getting bumped or jostled is high. Here are a few things to keep in mind that will make life easier for people with mobility challenges (pardon the shifting POV):

•  If you see someone using a cane, give them plenty of space. They are likely to be a bit wobbly, and any sudden bump, or even the potential for one, can be distressing at best and dangerous at worst. 
• If someone with a cane is standing in line, DON’T cut in front of them to get through. It’s startling and has the potential to set off a domino effect. There is extra space around me in a line for a reason – and the reason is NOT for people to pass in front of me. (This could also be true for a walker user, depending on how stable they are; always err on the side of caution.) 
•  If someone is in a wheelchair or scooter or walker, pay attention to how you engage with them. It’s easy to feel left out of a conversation and very uncomfortable when I have to strain my body to participate. If I’m standing with my walker, I can’t turn around quickly or easily to talk with someone. If I'm sitting on my scooter, I have to crane my neck to listen or speak if you stand off to the side or behind me. Place your body near or in front of me when conversing; look me in the eye. If you can’t see my face, I can’t see yours and I certainly don’t feel part of the conversation. This is especially true when two or more people are chatting with me. I know it’s not intentional, but it is so challenging to feel connected when I’m so disconnected physically. 
•  I’m one who doesn’t mind talking about my physical challenges, but not everyone feels that way. Ask if it’s OK to talk about it or to ask questions. I will probably give you way more information than you want! 
• The same applies around asking to help. I love it when people say, “Let me know if I can help” but I’m not fond of people assuming that I can’t manage things on my own. I’m very good about asking for help when I need it, but not everyone is – that’s why asking is so important. (See my earlier post for more guidelines on this subject.)
• When you're planning an event - party, concert, etc. -- try to use a venue that's fully accessible. That means access to the building and to the area where the event is, accessible bathrooms (and preferably ADA, with grab bars and toilets that aren't made for a first grader!), and access to food areas. If there are tables and chairs check for paths for people using walkers or wheelchairs. This seems like a lot to ask, and may not be possible at times, but being excluded from events due to lack of access sends a hurtful message. If you can't provide access, let people know so they don't show up and find they can't participate. It still may not feel good, but at least they will have the information ahead of time. 

That's it for now. It seems like a lot to take in, but really, it's common sense. We're just not conditioned to think about these things. But I'm making progress in training my friends!

The Courage To Do What Needs To Be Done

This weekend our choir (Aurora Chorus) performed three amazing concerts. We are 100 women singing peace, light, beauty and harmony.

This choir has become my saving grace. Singing has always been a huge part of my life – it is one of the major ways I define myself: Singer. I can’t imagine a life without singing, without performing, sharing the music, in harmony with one or with 99, and giving it as a gift to others. I’d listened to and admired Aurora for years, but knew I couldn’t commit to the rehearsal schedule and demands of learning the challenging music until I retired (I do NOT know how all you working women with families do it!). So three years ago, within a week of retiring, I was on the roster for the next singing term.

By the time I started with the choir my physical difficulties had begun to appear – walking was getting difficult, I’d started using a cane. I was easily fatigued, and tripping and falling were common occurrences. (Moments before one concert at which I was singing a solo, I tripped and fell backstage and landed hard on my knees.) It became obvious after the first concert that I would have to sit to sing – not a singing position I’m fond of, but concentrating on cues and lyrics and vocals is preferable to concentrating all my energy on staying upright.

The choir is demanding; there’s a lot of music to memorize, some of it very challenging. We have strict weekly rehearsal obligations, plus additional required rehearsals throughout the term. There are days it’s damn hard to get myself to rehearsals, and sometimes the thought of two full days of performing or rehearsing at our weekend retreat feels overwhelming. But I suck it up and I do it -- and I never regret it. The music fills me up, the community of women supports me and we share an incredible bond of the choir’s vision: Powerful women singing peace. We are blessed with a gifted conductor who draws a phenomenal sound out of a non-auditioned choir and who composes exquisite choral pieces.

I still try out for solos and volunteer to play an instrument on songs, and I’m part of a new ensemble that steps out of the choir for a song or two. In concert, this means getting up from my chair – with difficulty - and walking – with help – to a microphone or another chair or a place on stage with the ensemble. It is not inconspicuous. I use my cane, I usually have someone’s arm to lean on and I do my Frankenstein walk downstage. If I stand, I hold on to the back of a chair or someone’s arm. I’m in the spotlight and it is humbling. As I told Laurie this morning, a part of me feels incredibly self-conscious, and another part feels so proud that I have the courage to put myself out there for the thing I love so dearly. And I couldn’t do it without the love and support of my community, in Aurora and at home.

So today, I am completely exhausted, my feet and legs are so so so painful, but I am filled up and smiling inside, remembering all the warmth and joy of singing with my Aurora sisters, the delight of the audience responding to Hine Ma Tov, O Holy Night (Holly Near’s lyrics*) and Gate Gate, and the gales of laughter when, for an encore, we so seriously played our kazoos on Vivaldi’s Gloria. And the euphoria of all that work culminating in three stunning concerts.

Could I live without it? Yes, but for as long as I can muster the courage and stamina to do this, it will continue to be a vital part of my well-being because, in the words of Joan Baez, To sing is to love and affirm, to fly and soar, to coast into the hearts of the people who listen....

Bodhi svaha!

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*Holly's lyrics for O Holy Night:

O holy night, the stars are brightly shining
This is the time a new year is born
Long has lived the world in fear and error pining
But when peace appears, the soul knows its worth
A thrill of hope, the weary world rejoices
For yonder breaks a new and glorious morn

Rise from your knees, and hear the people’s voices
O night divine, O night let peace be born
O night, O night, O night divine

My Big Fat Tool Kit

It started with falling. A lot. Falling down the back porch stairs. In grocery stores, coffee shops. One bad fall just before a concert in which I had a solo. Usually I'd land on my knees (which contributed to a very painful torn meniscus and surgery to repair it last summer) and occasionally on my bum (which once contributed to a very colorful hip and cheek - no photo included here). The falls were due to a combination of loss of balance from peripheral neuropathy and from foot drop. My toes would catch on the slightest bump and over I'd go, with no good recovery mechanism because of the balance issue.

I'm using the past tense here, not because the problems have gone away, but because I have some tools at my disposal and because I've become so mindful of my movements and out of necessity, walk very slowly (which usually isn't a bad thing at all). It’s been more than a year since I’ve fallen. I've had some close calls, but with physical supports and mindfulness, I’ve managed to avoid that most unpleasant feeling of taking a tumble without a net.

I started with a cane. Looking back, that was probably the most difficult decision to make, as it signified the first real acknowledgement of disability. At first I used it only when I was out and about. It offers me stability and, as a wise person pointed out to me, it’s a signal to others that I have a physical challenge that isn’t immediately obvious. It was becoming difficult to be in crowds – I get panicky when I feel trapped or when I’m being jostled and the risk of falling greatly increases. Soon I was using the cane most of the time, even in the house.

Two years ago I was in the hospital for a surgery (which I may or may not discuss later). Apparently it became obvious to at least one nurse and by extension, my doctor, that a walker would be a good choice for me. A couple weeks later, the home health van pulled up and delivered one to me, which I was completely unaware of and unprepared for, emotionally. The walker sat for a week or two, me staring at it, feeling resentful and unwilling to take that step (so to speak). But when Laurie and I went for a walk and I was able to go farther than I had for months – maybe even years – I had a change of heart. I embraced it, decorated it (sock monkeys rule!) and began to have fun with it. What I love about these walkers is the built in seat – if I get fatigued or sore, I can turn around and voila! A chair! Waiting in line at the post office? No problem. At a party with limited seating? Thanks, I brought my own.

Ms. P and I "stroll" around the block

But the thing about a walker is, well, you still have to walk. And that’s become increasingly difficult and painful for me. I was having to drive everywhere, even just a few blocks to the grocery store or the library. So when Laurie’s brother and sister-in-law told us their friend was selling an electric scooter for a very good price, I decided to give it a whirl. Wow. Talk about getting my life back! Now I can zip all around the neighborhood, take Liza for long walks at her pace, go to the grocery store, the bank, the library and just MEANDER! I haven’t meandered for years! I feel like I’ve reclaimed my neighborhood. I’m taking photos again (my photo blog), now from the seat of the scooter – I call it “scootography.”

The point I'm trying to make in this long winded post is how difficult it is to accept disability - and nothing screams disability like canes, walkers and scooters - but once the hurdle is cleared, the tools available to us can improve the quality of life enormously. I could easily become a shut-in. But there's a lot of living to do out there in the world, and I'm so grateful for the tools available to help me do that. And to the people who've encouraged me to take advantage of them and who help make that happen.

Next up:  the biggest, fattest tool of all. We get a stair lift installed tomorrow!

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