Finding My Voice — To Sing Despite Chronic Illness & Pain

This may seem like a non sequitur, but I think people who can sing are really cool. My best friend is a singer, and when she cuts loose the sound is so beautiful it sometimes brings tears to my eyes-not just because she hits the right notes, but because she seems so natural, so comfortable, so confident.

When I think of the people who inspire me most, most are singers: Björk, Natalie Maines, Madonna, India Irie, Lady Gaga, Natasha Bedingfield… I could go on and on. It’s not just the gorgeousness of their voices or their awesome vocal technique; often, it’s about their message, and how I feel it through the music. They’re so, well, free. And powerful!

So I decided to take a singing class. I talked about it for a while, and I procrastinated because I’m nervous about performing in front of people. I kept singing in the shower, listening with a way-too-critical ear. Then one night, two people I’m quite close to surrounded me, shoved a class schedule from a local school in my hand, and basically forced me to sign up. That’s my story, anyway.

The first class was the other night, and I was really nervous. Turns out, some other students were WAY more nervous than I. Watching each person perform a few notes was fascinating; some people were clearly freaked out and giggled nervously, but others sang with confidence and ease. One woman sang when she wasn’t supposed to, and her voice was beautiful; she got embarrassed about missing her cue, but I thought she was fantastic.

Which brings me (in a roundabout way, I know) to you, Babes. We sick folk often lose our voices. We get shy, afraid to sing out in a crowd and let our opinion be heard. We get embarrassed, feeling like people hear us complain all the time…so why should we keep making noise? We feel something deep within but we get bogged down in how we think other people view us, and we’re afraid to speak up. We’re afraid to sing.

But just like that woman in class the other night-the one who sang out of step with the group but sounded marvelous-we have to get over our fear of staying in line with everyone else and learn to just BELT IT OUT! What we have to say is meaningful, valuable and beautiful. And while we may feel rusty at first, I know that with a little practice we can sing a tune that moves others to action.

Maybe you just use your voice on your own behalf, make a plea for help that is finally heard because you articulate your needs (symptoms? frustrations?) clearly and authoritatively. Maybe your voice soars over the crowd, reaching hundreds or thousands through a blog in which you tell your story and show others how to be strong.

Maybe your voice inspires your family and friends to learn more about your illness, or advocate for you or others. Maybe your voice will be so beautiful and strong that you reach another ChronicBabe who feels alone, who needs to be inspired to find her inner strength so she can start to feel better. Maybe you can change her life.

Once you start singing, who knows what could happen? I used to be afraid to speak up and use my voice to advocate for my own needs; the idea of speaking out on behalf of others, in the face of disbelievers or critics, seemed crazy. And look where I wound up, Babes?! On TV, in newspapers and magazines, on the radio and here on the internets, raising a ruckus on behalf of ChronicBabes everywhere. You can do it, too! Even if it’s just for your own sake, sing out. Make your presence known. I can’t wait to hear your voices!

Until then, I’ll keep singing in the shower. And in the classroom. And walking down the sidewalk. And to anyone who will listen.

Jenni Prokopy is founder and ChronicBabe.com, an online resource for young women with chronic illness. An award-winning writer, speaker, and expert on healthy living, she shares her personal experience – and rallies the expertise of hundreds of others – to help women live beyond their illness and be total Babes. Her writing has appeared in numerous publications, and she has worked with dozens of organizations large and small, local and multinational, to create compelling messages that empower people to work better, play harder. . .and be their best.

Related articles

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• ChronicBabe Blog Carnival #12: Health Care Reform (chronicbabe.com)
• ChronicBabe Blog Carnival #9: The Big Breakdown: When everything goes to hell, what do we do? (chronicbabe.com)
• ChronicBabe Blog Carnival #11: Arts & Crafts (chronicbabe.com)
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Get Ready By Testing Your Computer Speakers

Invisible Illness Week starts 9/14 at 9AM Pacific time in the USA. You will log onto the web site here at Blog Talk Radio.

…and if a program is currently LIVE it will start playing through your speakers.

You can also to listen to the workshops any time at www.blogtalkradio.com/invisibleillnessconf or you can download them from itunes onto your ipod. Just search “invisible illness podcast.”

Now is a great time to make sure your speakers are working!

The only thing that you will need are a pair of speakers connected to your computer! We recommend going to our programs last year that are archived at Blog Talk Radio and clicking on a few programs to see if your speakers are working.

I have logged on to Blog Talk Radio but I am not hearing anything. I can’t get it to work. What do I do?

First, don’t panic. All programs are recorded so it will be there later. Secondly, here is the help section from BlogTalkRadio.com . Make sure your speakers are also plugged in and the volume on your computer is turned up (Start>Control panel> -then look for something that is Audio/Volume, etc)

We have found the support/help at Blog Talk Radio to be very good in helping you find what may be wrong in case you cannot hear the program.

Their blog says

Visit the BlogTalkRadio Help Center – There are two great places to learn more about BlogTalkRadio and how to make it work to your advantage. The first is the BlogTalkRadio Learning Center located on the main BTR site. Included are tutorials, FAQs, screencasts and more, to help make your experience with us as simple as possible. The BlogTalkRadio Help Center, located on the BlogTalkRadio Blog, is a work in progress listing blog posts offering tips and ideas for a positive experience.

Worth noting: Lastly, we have room for 4 callers to call in to the show. You can actually listen to the show this way, but we also want to keep the lines open for callers after the workshop. So you can call to listen, but you may get bumped.

ALSO SEE: FAQ About the Conference | Overview of Conference

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Hope Springs Eternal – Illness and Art

The thing with feathers that perches in your soul, and sings the tune without the words and never stops at all (Emily Dickinson). Grounds for believing something good will happen (my dictionary). The one virtue that keeps us believing that, if the sun isn’t shining on life today, then the rain must be bringing a healing, restorative power that will brighten our tomorrow (me).

The group leader of my art swap group, 14 Secrets for a Happy Artist’s Life, is also an art therapist. She finds ways to enrich, enlighten, further the understanding, empathy and wisdom in our lives as artists and humans, which are inextricably interwoven. One of her latest endeavors is a course I have signed up for, on Resilience and Art.

While researching, she discovered a wonderful site, Wisdom Commons the source for many of the quotes I used in this post. It explores the character qualities valued by secular and religious traditions across the globe. Listed alphabetically, hope is found linked to faith.

Hope — Hope in the face of difficulty. Hope in the face of uncertainty. The audacity of hope! In the end, that is God’s greatest gift to us. . . A belief in things not seen. A belief that there are better days ahead. President Barack Obama

“We must learn to reawaken and keep ourselves awake, not by mechanical aid, but by an infinite expectation of the dawn.” Henry David Thoreau

Those of us living with chronic illness work to acquire a silver-lining type of hope to bring meaning to a daily routine with difficulties that might otherwise just be depressing.

Perhaps it was the need to find that hope that led me to explore a new, creative outlet when I had to leave my job. Art and illness are both a process, a journey, never entirely completed, always a new technique to learn, a new therapy to try. Then there is the need to feel productive, which is a byproduct of having worked full time for nearly 30 years.

Not long ago I made healing tags for the first time – one for a good friend who recently lost her father; another for a group member who lost her son to kidney disease, who talks on her blog about the devastation of outliving one’s child. I used pastels and watercolor crayons, which I hadn’t combined before, blending and rubbing to achieve a rich patina of blue-green.

I embellished them with what looks like hope to me, and I have to admit that I feel somewhat like a phony for espousing flowers and fairies to people who have weathered such significant loss.

For the past five years I’ve lived with chronic illness – an invisible one at that – but it’s not terminal so there is no finality to the grief. And I also do know there is much to be grateful for, there are always plenty of reminders should my memory fade. My faith has carried me through some fairly rough waters and the boat I have carved has held so far.

My hope is, that when I face the kind of grief that knocks the wind out of me, that lingers for a lifetime, it will be watertight.

I suppose when it comes right down to it, there is no life without suffering. Change. Struggle. Resilience and the ability to triumph over adversity. I have spent considerable time with those who have lost spouses, friends, relatives. And I’ve always wondered about the right thing to say in the wake of such profound loss.

Perhaps more than words, though, it’s about making the effort. Showing up. Faith. Love. Perseverance. Carry on, breathe in, breath out. Know that if hope offers no comfort today it will continue shining long enough to bring warmth when the clouds part.

National Invisible Chronic Illness Awareness Week plays an integral role in raising awareness and acceptance of the challenges faced by the thousands of people living with invisible chronic illness. National Invisible Chronic Illness Awareness Week provides much needed validation and support for those struggling to function in a society that moves at a rapid pace and places enormous value on productivity.

Patti Edmon is a former owner and Creative Director of EdmonDesign, a marketing and advertising firm in Lexington, KY. Prior to being diagnosed with Psoriatic Arthritis and Sjogren’s Syndrome early in 2005, she rode horses competitively, studied advanced fiction, managed the business and took care of her two children, now eleven and thirteen.

She has spent the past few years creating the Altered Attic, the name of her art studio, where she spends time, on good days, producing altered and mixed media art.
A lifelong writer, her non-fiction has appeared in regional publications. Visit her at http://pattiedmon.blogspot.com, where she posts her art and thoughts on an altered life.

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