It’s that time a year again. Another Labor Day is coming, a time when I have tended, for most of my life, to reflect upon my own reflection, to look at myself the way that others see me, to explore the realities of disease, hope, disappointment, joy, and even identity. If you remember the long-running Jerry Lewis Labor Day Telethon for MDA, then the reason for my seasonal introspection will begin to unfold. This nationally distributed poster from the late 1970s may help too:
Yes, I was once a poster child. And I still feel like one in many ways … more on that in a minute, but first, a little bit of history.
Back in the Day
My motorneuron disease (SMA) falls under the umbrella of the Muscular Dystrophy Association, an association founded in 1950 to bring attention to 40 different neuromuscular diseases, most of which affect children. The Association also raises donations to assist those affected by the diseases and to fund scientific research for cures. In 1980 and 1982, I was the official “Poster Child” for my local chapter of MDA, traveling throughout the state of New Hampshire for events and fundraisers.
The climax of my duties was to appear on our local cutaways of the Jerry Lewis Labor Day Telethon. For those of you who don’t remember, this long-running telethon was broadcast live on television stations across the country for over 21 hours, from Sunday through Labor Day itself. During my time as Poster Child, the Telethon was very popular and successful, with WMUR in Manchester putting up a temporary studio at the Sheraton-Wayfarer Hotel for our cutaways, about 10 minutes every hour. I well remember the bright lights and cameras, the countdown cues from people wearing headsets whenever it was my turn to be “On Air.” Little, blonde, dimpled me, sitting in my manual wheelchair, would then look into the camera, speak into the microphone, and tell people to help fight MD.
That’s a lot of attention on a little girl! Random people out in public somewhere would come up to me and say that they saw me on the Telethon. I was the center of attention throughout the year at various fundraisers as well. With either one of my parents, my sister, or the whole family, I would attend bowl-a-thons, dance-a-thons, skate-a-thons (rollerskating, mind you, when rollerskating rinks still existed), and rock-a-thons (where people would rock in rocking chairs for as long as they could). Smiling strangers would come up to me, sometimes with gifts, teenaged participants would crowd around me, and local newspaper photographers would take my picture as I posed with this person or that group. I would be smiling so long and so often that cheek-ache became a familiar sensation of childhood.
My “job” as a kid seemed to have been to garner attention, to have eyes upon me, to elicit a kind of affectionate concern, sympathy, and generosity. And I was very good at it.
Maybe I still am.
The title “Poster Child” was eventually dropped by MDA and replaced by “Patient Ambassador.” Probably with good reason, as there seems to be a negative association with the word. There have been times, indeed, when I have felt like a poster child — a poster child for disability, a poster child for “it could be worse,” or, more so lately, a poster child for “how to find joy in the midst of suffering. ” People will see me, smiling in my wheelchair, in person or in pictures or videos, or they will hold an image of me as they hear or read my words on radio or in print, and they will think certain things about me. Even though this is natural — we humans do it all of the time, for better or for worse — I can’t help feeling like I’m still a kind of poster child, representing something bigger than myself. Whether I want to or not.
I’ve been called an inspiration since I was a very little girl. A priest once told me that I’m a “Saint Maker” — someone who causes people to be kinder, gentler, and more loving. This is all good. But what does it mean? Throughout my life, I have felt other people’s projections and expectations upon me, just by simply being. I wouldn’t really need to say a word in order to inspire or cause other people to be nicer or holier. In fact, I wasn’t very talkative at all at those MDA events, but rather shy. It was not my wisdom or talent that inspired others. It was my body: the diseased and crippled body that I could do nothing about and the smiling personality that I was also merely born with.
Although I’m no longer a child, although I have grown in real wisdom, which I am able to share through my real talent for words, I still feel like an image sometimes. There’s no sense in fighting it, of course. I’ve actually discovered that, by working with my image, I can use it to garner something that I do want: attention from an audience that I can maybe help by influencing them toward the good, the true, and the beautiful. However, even if my book (or books) became wildly successful, I would question. I would wonder. Are people really seeing me, are people really hearing what I have to say? Or are they, like in my MDA days, being convinced by a one-dimensional image, designed by someone other than me, to manipulate their response?
— Am I God’s Poster Child, fulfilling my role by simply showing up?
Hmm … I’m not sure about that thought.
But … is that maybe what all of us are?
© 2021 Christina Chase
Christina Chase View All
Although crippled by disease, I'm fully alive in love. I write about the terrible beauty and sacred wonder of life, while living with physical disability and severe dependency. A revert to the Catholic faith through atheism, I'm not afraid to ask life's big questions. I explore what it means to be fully human through my weekly blog and have written a book: It's Good to Be Here, published by Sophia Institute Press.
Thank you for sharing your story here.
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Your post made me think of Jesus on the Cross. Just looking at Him changes us, heals us.
My disease is also under the MDA umbrella (Charcot-Marie-Tooth), but I was diagnosed as an adult.
Now, as a writer, CMT is weaved into my stories. It is not who I am, but is part of my experience. People get inspired…perhaps it is because in our visible weakness, we resemble a little bit more the One Who died on the Cross for Love.
That is always my prayer…that they hear Him in my words… that they see Him in me.
I see Jesus in you Christina. 💕
Hello, my fellow MDA patient 🙂 — Yes, what you’ve written here is the ultimate! My words, even my life, are not my own, I am not my own source. St. John Henry Newman’s Jesus Prayer is a beautiful prayer to remind us and help us to reflect Christ to the world, so that others may see Him in us and be transformed by Him.
Writing my memoir is bringing up memories, thoughts, and struggles. I confess that I have not often been a humble person (I’m still not.) My body image, my desires, my relationships with people — all of these are part of me and what I am trying to sort through to gain clarity. Truly, there is no higher honor or goal than to help another see Jesus! Your writings also show me the face of Christ! Peace and blessings,
You are truly are a saint maker – and a saint! Your reflection is beautiful!
I’m sitting here at the beach look out at the ocean reading your reflection. For me, I feel Gods presents at the ocean and a calm peacefulness. I was looking out at the sun rise after reading your reflection and thinking about the many people you have Certainly touched through the years, and how you’ve lead them on a better path with God-because of You and your writings…I certainly am one of those people!! You remind me of a true Saint, You being you!! Because you are so unique with your writings and your story- I believe you are a saint of our day!! Thank you for changing my life and bring me to a better place with God!
Thank you for reflecting with me and for all of your encouragement! Your words remind me of how Nature speaks of God’s power and beauty without any words at all. The intelligence of a flower, a bumblebee, or even an ocean is the intelligence of the One who created them and set them on their paths. As is true for all of us. There is only one true source — the Source of All. As humans created in the divine image, we are made to reflect God’s intelligence, power, and beauty — and most exquisitely, His love — into the world. It is truly a great gift to be human and partake in the divine life.
I’m grateful to God for the glimpses, whispers, tastes, and fragrances that He has shared with me in this life. Whenever I grow in any understanding and am able to communicate that with my fellow human beings, I’m reminded of how very good God is and how thankful I am that He created me. This particular reflection was not written in advance, mulled over and modified for effect. It was written the way that I usually write — from an open heart, willing to be lead where God wants to lead. Therefore, that little insight at the end was a surprise to me, one that I’m still pondering. …Each one of us is God’s Poster Child, representing something bigger than ourselves for the benefit of some greater good — God’s Will, God’s Plan. None of us needs to be particularly talented in an outwardly appreciable way. We just need to show up and let the Spirit work, kind of like I did, unknowingly, as a child.
You, too, are saint maker! We cannot know all the ways in which we inspire others to gratitude, to love, to mercy, to holiness. Every human being needs encouragement and love — thank you for sharing both with me, to help me on my path! ❤
Good Morning/Evening Christina, I’m not good at expressing myself just wanna say your story has resonated with me and I’m so inspired by you and your work. Please don’t abandon your work on YouTube as that’s where I initially found you.
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Thank you very much for taking the time to share this encouragement with me! Your request for me to continue making YouTube videos made me smile, with an embarrassed little, “I know…” I know that I have been absent there and I’ve been meaning to address some technical issues so that I can return. But, I have been procrastinating, sometimes thinking that I shouldn’t bother, not that many people really watch my videos anyway. Your words here have given me the push I needed to get back to it! If you want to share which particular video meant the most to you, or have any suggestions on what you’d like to see, please do let me know. I truly thank you very much for this nudge! Peace and blessings to you,
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I do not have the creativity and strength with words you have, especially your answers to the two previous comments which were so deep and all encompassing! I can just say, I LOVE YOU JESUS and thank YOU for giving us Christina!
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Thank God for Martha! The volunteer work that you have been doing in the nursing home — your very presence — speaks of love and communion more deeply and beautifully than words ever could. God is generous and gives each of us gifts to share.
Thank YOU for sharing some love and encouragement with me today! With prayers for peace and blessings,
In the peace of Christ,
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That’s an interesting thought, Christina. My first reaction was, “Really? Maybe. “ But then I thought, “What about free will?” If we could fulfill our role by “just showing up”, wouldn’t that make us little more than robots? I think God wants and expects more from us so I think we take an active role in fulfilling our role. I, also think it takes our whole life to discover exactly what our role is and how best to fulfill it, at least I hope so, because it’s taking me a very long time.
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I love these thoughts — thank you! Yes, I’m thinking that it may take a lifetime to discover exactly what our role is and how best to fulfill it. We may not even fully know until the next life. As for showing up, I think that does take an act of free will. We cannot merely exist, we must be truly present, and I think that when we are fully present and willing to do what God wants us to do, then we will participate, engage, and contribute naturally from a loving desire to do our best. Sometimes, we don’t know what we’re supposed to do until we are in the moment. Maybe we don’t even know what our lives are supposed to be until after we have lived them? (Well, that could prove troublesome for memoir writing…hmmm) …You’ve got me thinking and I love that! Thank you for reflecting with me!