How I Feel About “Better Dead Than Disabled”

I don’t usually talk about what I’m planning to write until after it’s written. My process involves more internal processing, figuring out my thoughts while writing them, before I’m prepared to have discussion later if anyone wants to talk about it. But this time was an exception. I stated multiple times that I’d be writing this over the weekend, mostly so I couldn’t back out of the commitment. I have so many intense and deeply rooted emotions on this one. Now I have to dig them up; sit with them; see, hear, and feel everything they have to say; and then try to capture them in words…. It’s going to hurt. So here goes.

I’m pretty sure that I heard whispered warnings of the movie Me Before You in my disability circles long before it came out. Immediately placed on the list of things I didn’t want to think about, my selective memory filtered it out. So a few weeks ago, when someone mentioned the movie to me, I sincerely had no idea what they were talking about. But they only had to describe the exposition for a sentence or two before I cut them off, “Let me guess. Is this one of those ‘assisted suicide’ movies where the disabled character dies in the end?”

Yes, yes it is.

Let me give you some context. In all my years of movie watching, I’ve never seen a character in a wheelchair play the romantic lead. I’ve never seen a character in a wheelchair play the CEO. I’ve never seen a character in a wheelchair play the crime-solving detective. I’ve never seen a character in a wheelchair play the gifted musician/artist/athlete who goes all the way. I’ve never seen a character in a wheelchair play the doctor saving lives. I’ve never seen a character in a wheelchair play the justice-seeking lawyer. I’ve never seen a character in a wheelchair play the snotty mean girl. I’ve never seen a character in a wheelchair playing the dumb jock. I’ve never seen a character in a wheelchair play the save-these-at-risk-kids teacher. I’ve never seen a character in a wheelchair play the hard-hitting news reporter. I’ve never seen a character in a wheelchair play the mom or dad. I’ve never seen a character in a wheelchair play the brave teen who saves us all from dystopia.

Are you getting the idea? I don’t mean rarely, or sometimes, or that one time. I mean never have I ever.

Instead, you know what I’ve seen? I’ve seen the character in a wheelchair  play a tragedy-wrapped-up-in-a-person. The plucky character in a wheelchair who suffers nobly and inspires everyone around them, all while yearning for a life on their feet. The character typically dies in the end. And these days, the character “bravely” decides to die on their own terms.

That’s it. That’s how Hollywood sees me, and broadcasts me to the world. According to the movies, my friends and I don’t even exist, and/or we’re better off dead.

Do I really have to go on? Isn’t it self explanatory how messed up this is?

If you think these are just movies, no big deal, not real life… Well, friend, I’m going to be one of those people and tell you to check your privilege. These movies promote a “better dead than disabled” mindset that absolutely impacts my real life.

I can’t tell you how many times people have said to my face, “I’d rather just die than live your life.”

What?! How is that ok?? There’s never a reason to say that to anyone! I’ve watched a lot of people face a lot of tough life circumstances, and while I don’t generally envy them, I’ve never had any inclination to tell someone their life is worse than death. Never have I ever. What’s the right response to that anyway?? I’m pretty sure I’m not supposed to agree, “Yeah, you’re right, I probably should just off myself.” Or maybe I am? Am I supposed to argue and persuade them that my life is worth living? That’s a really crazy position to put a person in. Why should I defend my quality of life to random people on demand? Typically I just settle for looking at them with a baffled look on my face. It’s the most sincere response I can muster, and it puts the burden back on them to explain themself.

It isn’t just socially inept individuals who make me defend my life’s value either. It’s society at large. Let me tell you about the cognitive dissonance it takes to be a liberal Portlander in a wheelchair.

To be a card-carrying liberal Portlander, it’s basically required that you can deliver a lecture on environmentalism, income inequality, or LGBT issues at the drop of a hat. That’s cool. It’s also highly recommended that you can at least throw around a few terms to show your awareness of racism, feminism, and immigration issues. Also cool. But when it comes to disability issues, my people suddenly turn on me. I challenge you to find an able-bodied liberal that can even name some actual, relevant disability issues.

The only pseudo- disability issue that I ever hear in conversation is assisted suicide. I can’t tell you how much I dread those discussions. I can be in a circle of friends, colleagues, people who I generally like, respect, and agree with on most things…. And then they’ll start talking about the latest “right to die” story. Suddenly I’m listening to descriptions of a life very much like my own–a life where a person needs help with most personal care and hygiene tasks–and everyone agrees that it’s so undignified. They swear that if they ever end up in the situation, they’ll choose death over becoming a burden to their loved ones.

So apparently that’s how they all see me. An undignified burden. An undignified burden without enough going for me to justify living. Thanks for your honesty.

(Don’t tell me that assisted suicide laws only apply to people who are going to die soon anyway. That may be the intent on paper, but not the reality of how it’s carried out.)

People think they’re being so open-minded and compassionate. But here’s the thing–is there any other group of people where you advocate for their suicide? I try to be careful about making comparisons, but sometimes it feels appropriate: The LGBT kids get an “it gets better” campaign, and we get euthanasia. They get suicide prevention hotlines, and we get a needle.

Do you understand how terrifying it is to be in the group that society agrees is better off dead? If you, my able-bodied friend, are ever feeling suicidal, you can bet your friends and family will do their best to support you and make sure you get the help you need to manage your depression. They’ll encourage you to get counseling, medication, whatever it takes, and assure you that eventually you’ll feel better about the world, that your life matters and is worth fighting for. But me? I can’t count on that. There’s a perfectly good chance that if I’m ever back at a place in my life where I’m thinking about suicide, people will just go along with it. They’ll hook me up with the resources and help me do it. Later, one of them might get a book deal, or a movie, or at least a TED Talk, where they’ll tell “my” story, except that it won’t really be my story.

Is this dark enough for you yet? Trust me, I’m enjoying this much less than you are. But this is the dark story that you keep applauding in Hollywood, America. All I’m doing is removing the faux glitz and romance.

Here’s a novel idea. What if we treated depressed and suicidal disabled people like we treat any other depressed and suicidal person? What if we encouraged counseling, medication when necessary, and warm, supportive communities? Life with a disability is hard. But generally it’s only hard because of a lack of resources and/or support. When I’m feeling depressed, it isn’t because I’m in a wheelchair; it’s because I feel pretty alone in the world. And I’m terrified that as I get older and more disabled, I’ll be more alone. Why don’t we take the approach that we take with other marginalized groups, and tackle the issues that make life with disability so hard? Why isn’t suicide prevention our primary concern?

How about now? Too dark? Too honest?

I’m going against my better instincts and sharing on such a personal level, because I believe “human face” is the best way to get people to actually listen and care. And Hollywood isn’t giving you faces that say “disabled people are a valuable part of our society,” so I guess I’m offering my own face. It’s all I can give.

….I started to write something about how upsetting it is to watch us “losing our humanity” in this way. But you know what? That implies it’s a new problem. This isn’t new. Disabled life has been devalued throughout history. Cast aside, locked away, killed off. We don’t even vocally criticize Hitler for killing the disabled. It’s not a pretty history or a pretty current reality.

But I’m going to hold onto this idea that humanity can and should be better than this. That we’re capable of judging a human life as valuable–priceless–regardless of their physical ability. We all need to be taken care of in different ways and at different times in our lives. Shouldn’t taking care of each other be a central, driving purpose in our lives? Not a burden that we view with disgust and shame?

I’m never going to be able to provide the same level of physical care for another person as what I receive. But so what? I give in all kinds of ways, and what I give matters. My disability often puts me in a unique position to give and provide care in a way that others can’t.

There’s no lack of dignity in that.

My dignity is only robbed from me when the able-bodied make me into a vessel for their fears and insecurities. An object of misplaced pity. A tragedy-wrapped-up-in-a-person.

Do better, Hollywood. Do better, everyone.

Let me tell you what I think of the wall…

I’ve wanted to write about this for a long time. I need to write about it now.

First, I’m going to tell you a story. Then, I’m going to tell you another story. And then, I’m going to tell you why I’m so full of anger, hurt, sadness… that I can’t even talk much about it.

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First, a story. Many of my friends have heard it before, because it’s one of my favorites.

My first year teaching, our student council was made up entirely of white students. Election season came, and once again, only white students were running–with one exception. A brave Latina girl from our Beginner ESL class decided to run for president. She was still new to the English language and new to the country, but she committed to getting up in front of the school and giving a campaign speech. Just her decision to try made me proud!

Then I watched her designing posters, putting them up around the school, and carefully preparing her speech. I assisted a little with the English, but the ideas were all her own. Her process and effort made me prouder still.

Election day came, and this student got up in front of the school, beginning her speech by introducing herself in Spanish. Still in Spanish, she asked for everyone who could understand her to please raise their hand. About a third of the hands in the room shot up, and the looks on so many faces were just priceless. They were all looking around, confused and surprised, as if noticing for the first time how many Spanish-speaking students go to our school.

The rest of her speech was in English, and it was some of the most beautiful English I’ve ever heard. She talked about the importance of every student voice being heard–no matter who you are, where you come from, or what language you speak, your voice matters. She very honestly expressed that she loves our school, but feels some voices don’t get listened to. She promised to do her best to listen and represent all students. It was beautiful. I’d heard her practice it multiple times, but I still teared up listening to her delivery. So proud!!

Maybe my favorite part was listening to the students’ conversations as they filed out of the cafeteria. It was mostly summed up by the one (Latino) kid I overheard saying, “I didn’t know we could do that…”

My brave student changed things that day. She didn’t win the election (although they found another space on student council for her), but it didn’t matter. She let a huge portion of our student body know that this is also their school, and they belong, and their voices matter. She gave them permission to walk taller and take ownership of their school and the spaces they occupy.

*  *  *  *  *

Another story.

My second year of teaching. I’d already gotten used to hearing little comments from my students that communicated their feeling of “not belonging” in the United States. It didn’t matter that many of them had lived in the US for most, if not all, of their lives. They spoke of themselves as “others,” not as Americans. They spoke like kids without a country–lost, hurt, jaded, afraid.

But it was 2008, and Obama won the election. We didn’t talk much about it, because politics at school is so sticky. Then it was January 20, 2009, and TVs were set up around the school for anyone who wanted to watch the inauguration before school started. That wasn’t politics; it was history.

We didn’t start class on time that day. We couldn’t tear the kids away. They were glued to the screen, completely riveted. I’m telling you, the light in their eyes changed that day. The comments changed. It was just like the student election the year before, “I didn’t know we could do that…” The kids started speaking with hope in their voices. They talked about the United States as their country too. If a person of color could be president, then who knew what else was possible?

I don’t care what you think of Obama or his politics. His election and inauguration was a powerful moment in our nation’s history. It meant something very real, and very personal, to my kids.

Today, when my students learn that Obama is the only non-white president we’ve ever had, and that we still haven’t had a female president, their jaws drop. We’re raising kids now who can’t fathom a country where only white men get to be in charge. Their perspective is skewed, and I love that it’s skewed! They believe in a world the way it should be.

*  *  *  *  *

America, you broke it. All of it. We’d made so many steps forward, and then you had to go and break it.

I can’t tell you how much it hurts me to be living in a Trump world. It doesn’t even matter that he’s only a presidential candidate at this point, and hopefully will never be more than that. The damage he’s already caused is enormous.

I’m not so naive to think that everything was sunshine and roses pre-Trump. I’m not one of those people who think racism ended the day Obama took office. I’m very aware that it’s been there all along, never went away. But we were making baby steps. And now this.

Once again, my kids are walking around in fear, outsiders in their own country. It isn’t just that Trump says terrible things about them; he’s made it ok for anybody to say terrible things about them. All the time, they’re hearing hate spewed in their direction. They’re hearing that they’re unwelcome here. That they’re what’s wrong with this country. After all the sacrifices their families have made to be here–sacrifices that most of my readers and I will never really be able to understand–to work, learn, and contribute, they’re treated like this.

They’re just kids! America, how dare you treat my kids this way! How dare you keep handing the microphone over to Trump! He may have a loud voice, but we never had to listen. We could have changed the channel a long time ago. But instead, America, you’ve egged him on. You’ve gotten on his bandwagon. You’ve spread the hate, loud and proud. You’ve validated the ignorance and treated the racism as worthy of air time. You’ve defiled democracy by allowing Trump’s name on the ballot, and then you’ve continued voting for him. How could you? How could you do this to my kids? To your kids? Because guess what, America, these are your kids too. And you’re failing them.

The kids are so confused right now. They’re full of hurt, and anger, and fear… And I don’t know how to help them. They don’t understand what’s happening in our country right now, and how could they? It doesn’t make any sense. They have all these feelings, and no idea what to do with them. (Also, I have all these feelings, and no idea what to do with them.)

Much like the adults (who have more developed prefrontal cortexes, calmer hormones, and way fewer excuses!), the kids are getting swept away in the fervor. There are the kids spouting lines they hear from the Trump camp, with very little understanding of the harm they’re causing. And there are the kids fighting back and standing up for themselves and their friends and neighbors. But they’re kids, and they don’t always know how! They have so many thoughts and feelings, but they don’t know how to make sense of them, how to express them, how to be heard. They’re leaping into action, with no thought for where they’re going to land. Some are getting carried away by tidal waves that they can’t even name. The emotion is infectious, and emotions lead to choices and actions that aren’t always thought out…

America, you say you’re going to build a wall, but you already have. You’ve built so many walls this last year; I can’t imagine how much time and work it will take to ever bring them down. You’ve built walls between people. You’ve built walls around people. Inside people. I’ve spent my career working so hard to break through my kids’ emotional walls, to find their soft and vulnerable inner voices, to help them express what’s inside. But now I’m watching those walls go back up. And helping them find the words, the safety, and the forum to express themselves, to share their voice, is harder than ever. Helping them to feel empowered and hopeful, when I’m feeling helpless and despair myself, is so hard. I want to assure them that things are ok, that the adults have this under control, but none of that’s true. It’s not ok, and it’s not under control…

All I can tell the kids is that we need their voices, their thoughtful contributions to society, more than ever.

Building walls is easy. It’s tearing them down that takes real work.

My fellow humans are pretty impressive.

It used to drive me crazy that I teach a subject without a real curriculum. Combined with the fact that my education program was insanely light on teaching curriculum development, I was left pretty lost, overwhelmed, and frustrated as a new teacher. But now I’ve been doing this long enough that I’ve come to embrace teaching one of the only subjects left with significant creative freedom. There will never be a canned curriculum that I enjoy teaching as much as my own units, and nobody knows how to meet my student’s needs better than I do. (Sad how that feels like such a bold claim these days, rather than like stating the obvious….)

There are plenty of topics that I love teaching for the impact on the students. But there’s one that I also love for my own personal enjoyment–guys, the career unit is the best. It feeds me mentally, emotionally, and spiritually.

Lots of elements come together in my career unit. The kids are doing research, taking notes, summarizing, evaluating, and after lots of exploring, creating a presentation on a career of their choice. And that’s all great. But the fun part, the part I talk about incessantly to anyone who gets stuck listening, is the guest speakers!

I’ve taken the traditional “career day” model, and exploded it. I’m sprinkling career speakers over the course of 7ish week, and they all come from my personal network of friends, family, friends-of-friends, etc. And thanks to the wonders of Skype, I’m not limited to local speakers! We’ve had guests from all over the country chat with us about their careers.

(Fun random video about career day!)

Each class ends up getting a different assortment of speakers, and we’re not done yet, but so far we’ve chatted with a(n):

  • physical therapist
  • speech pathologist
  • naturopathic doctor
  • historian/writer
  • professor
  • embalmer/aspiring funeral director
  • public defender/judge
  • news producer
  • immigration attorney
  • doctor/urologist
  • advertising copywriter
  • social media/outreach specialist
  • physician’s assistant
  • stage manager
  • educator
  • graphic designer

(I hope I didn’t miss anyone…) It’s been fascinating! For the kids, obviously. But I’ve learned from every speaker too! It turns out that everyone I know is an expert in something. Everyone has a wealth of knowledge that I don’t tap into very often. And my brain loves being woken up and fed these tidbits from fields that I’m only barely aware of. I love knowing more about how the world works.

Did I mention that everyone I know is an expert in something? It’s so inspiring. I think most of us have a certain way that we tend to relate to each of our friends–the topics that we usually talk about, the tone our conversations usually take, the jokes we usually tell. But I’m seeing everyone outside those usual ruts. I get to hear the details of what they do, what they love, what they’re passionate about. Many are digging back into their roots, and sharing where their journey started. Some admit to weaknesses, vulnerabilities, stumbling blocks that have made their path tough. And everyone projects an air of confidence as they discuss the stuff they know, the stuff they’re good at. It’s fun to see my people shining in their comfort zone, while hearing the story of how it became their comfort zone. I keep gaining new levels of respect and love for everyone I have the opportunity to listen to!

One of the most common themes I’ve heard is “I never imagined that life would take me in this direction.” A few people are doing exactly what they always planned, but most aren’t. Most people seem to start going in one direction, and then trying this other thing, and then meeting this person, and learning this thing, and then applying it to something else… Looking back, they can talk about how all the steps along the way taught them something that’s valuable now, and brought them closer to where they are. But in the moment, they had no idea the direction life was going to take.

I find it inspiring on such a spiritual level! The way we don’t have the perspective to see the big picture in the present moment, so we just squeeze all the value out of it that we can. Then we carry those things with us, and make them part of us, so that we’re better prepared for the next opportunity/curveball that life throws at us. I fully believe that it’s not random, that God can see the full map, and knows how all these things will work together for our good. And I kind of love how messy it is! Daily life can feel so chaotic, but with distance you can see the order, the form, the beauty.

My fellow humans are pretty impressive. Everybody has such a wealth of stories, knowledge, and wisdom to share. We don’t appreciate each other nearly enough.

A story all about how my life got flipped-turned upside down…

Since I started teaching, I’ve referred to summer as my “time to get to know Kristine again.” Being Ms. Napper is pretty all-consuming. But the last couple years, I’ve made steps toward holding onto Kristine during the rest of the year. This year’s New Year’s thing–not exactly a resolution, just a thing–was starting this blog. I needed writing back in my life. Putting my thoughts into tangible words helps keep my feet on the ground.

In 2015, my back-to-Kristine thing was joining a choir. And I’m still thanking 2015-me for being smart enough and brave enough to make that leap! I needed music back in my life. So badly.

I was a choir kid throughout middle and high school. Started in 6th grade, and fell instantly in love with everything about the music-making process. Instantly idolized Ms. Duck, who expected us to comport ourselves like professionals at all times and accepted nothing less than our best. I also idolized the older students who’d been in choir longer, and were doing cool things with leadership positions, small groups, solos, musical theater, etc. I wanted to do everything they were doing!

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I did get a little taste of all that when I was in 8th grade. I was choir vice president. (And I honestly still don’t know how I got nominated or elected….) I sang baritone in the girls’ barbershop group. I got a teensy, tiny little part in the school musical.

At the end of 8th grade, I was thrilled when our teacher announced that she was also moving to the high school the next year. Being the kind of person that hates change, I was a big fan of something staying the same when I started high school. I still remember that first day of 9th grade, when everything was crazy and overwhelming, and I couldn’t even get to half my classes because of a broken elevator. Choir was my last class of the day, and it was such a relief and boost to my spirits to walk into a room where everything just felt right! New room, a handful of new faces. But it was the same energy, the same routines, the same musical journey. Only better! We got to pick up where we left off, and keep moving forward, excited about what our slightly more mature voices could do.

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I stayed with it throughout high school, and I loved it. I really did.  Even during The Dark Year, my senior year, when Ms. Duck had to abandon us for the year and everything in the choir room was terrible, I never considered quitting. (I don’t even know why, because I don’t remember actually enjoying choir that year… Pure loyalty to the program, I guess.) But the truth is, it was also hard for me. As much as I loved singing, I always knew I wasn’t a very strong singer. All the hard work and dedication in the world wasn’t going to do more than marginally change that. I got 8/10 on every “voice test” I was ever given–not a bad score, but so frustrating to never break the ceiling! High school is a bigger pond than middle school, and I was a small fish. I was never chosen for anything I tried out for. Rejection always hurts, no matter how much we pretend that it’s rolling off our thick skin. And it was hard to watch everyone else (at least, it felt like everyone else) bonding over shared groups, shows, and events that I couldn’t be a part of. I spent so much time on the periphery, wishing I were one of them, that I can still tell stories  from trips I never went on, recite quotes from shows I was never a part of, and sing lines from songs I’ve never sung. (Have I mentioned what a cool kid I was? Goodness….)

By the time I went away to college, I couldn’t do it anymore. If the high school pond was already too big for this little fish, then BYU was an ocean I’d surely drown in. I didn’t want to sing in the “no audition necessary” group, because I knew I’d be bored. I needed more challenge than that. But there was no way I’d be accepted to any audition groups. So I declared the choir chapter of my life over. I tried to sing in church choir on-and-off over the years, but most of those groups at BYU tended to practice in places that were upstairs with no elevators. The directors would shrug helplessly and tell me “I wish you could come.” But I knew they didn’t wish it that badly. It was BYU, home to a gazillion pianos! The campus had plenty of accessible spaces where they could have held practice. Inaccessibility was a choice, and I wasn’t going to beg to be included.

Adult life had been pretty much the same. I’d sing in church choir now and then, but accessibility issues got in the way a lot. And even during the periods when I was actively participating and even enjoying, church choir is only church choir. It has its place, but it doesn’t come close to meeting my musical needs.

At age 30, I finally recognized that there was a giant choir-shaped hole in my life, and it wasn’t going away. I always figured I’d stop missing it eventually, but I was wrong. I needed singing back in my life.

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I spent a while exploring the internets, looking for local opportunities, and not finding much that fit. This group looked too intense. That group looked too sing-alongy. These groups practiced in inaccessible spaces. Those groups were too much time commitment. I’m too old for that group, and too young for that other one.

Until I finally stumbled across PDX Vox! The locations weren’t ideal for me in my westside suburb (a fact that has since changed), but everything else looked like exactly what my soul was craving. When my “is it wheelchair friendly” inquiry was answered with the most thorough, detailed, thoughtful response I’ve ever received to an accessibility question–decision made.

And it was such a good decision. I nervously showed up by myself to a place I’d never been, with a hundred people I’d never met, and immediately felt I’d come home. It was like 6th period on the first day of 9th grade, all over again! It was amazing to be with “my people” again, speaking a language I hadn’t used in years, exercising parts of my body and brain that had been neglected, but still mostly knew what to do. When I was 18, I’d been so afraid of the too-big pond, that I’d taken myself completely out of the water! I don’t know how I even survived like that until 30. But it felt fantastic to slip back into the water and start swimming again.

Choir really does feed my mind, body, and spirit. I’m one of those nerds who loves every step of the process. I love getting new sheet music, reading the notes on the page, figuring out my part, and how it fits into the song. I love letting go of the sheet music, finding out how much of it lives inside me now, and moving from the mechanics to the artistry. I love interpreting, shaping, and playing with the song. I love the performance piece, where we invite a room full of people to feel something with us–to feel lots of somethings with us, actually.

And I love the group dynamics. It’s truly magical when a group of people come together, blending their different voices, to create something as one. Everyone breathing together, feeling the same rhythm, shaping their mouths the same way, listening to each other so the harmonies are tight, bringing the volume up and down, creating a mood, telling a story… Is there anything but music that can bring people together on that level?

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I’ve only been part of Vox for a little over a year (three sessions), but I’ve already heard Andrea say many times, “I came for the music. I stay for the people.” Andrea’s not wrong. (Ever.:)) It turns out that the world’s warmest, friendliest, kindest, funniest, most genuine people all live in the Portland metro area and have a passion for singing a cappella. (Who knew, right?) I was overwhelmed with welcome the first time I showed up, and I feel so lucky to now be part of a such a great group of people. These aren’t the kind of people who make you beg for accommodation or inclusion. They’re the kind of people who naturally accommodate, not just for me, but for everyone and their unique needs. Because of course. That’s just what you do. They’re the kind of people who make a space feel safe. It’s safe to take risks. It’s safe to choose not to take a risk. It’s safe to laugh or cry or both; you’ll be encouraged in whatever ways you need.

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The magic of Voxers being such high quality humans is probably the trickle down effect from our director. Maybe I still have the childhood habit of idolizing choir directors. But I’m pretty convinced they don’t come better than Marie Schumacher. I have endless admiration for her as a musician (look up her stuff, and thank me later), as a teacher, and just as a person. I know she’s always juggling a million things at once in her life, head, and heart, but she still speaks and listens to you as if you were the most important person in the world. I think we all want to be a little more like Marie, and maybe that’s why we bring our best selves to Vox. Or at least we try to!

Every week, I have to talk myself into going to rehearsal. I’m always so tired, and surely I could just skip it this once… But then I suck it up and go, because I’m always crazy-glad I did! I leave reinvigorated. Tired, but fed. My soul needs this. Choir needs to stay a priority in my life.