"Before I die I want to", ADA, adaptive cycling, advocacy, Americans with Disabilities Act, art, athletes with disabilities, Before I Die, Bike MS: Coastal Challenge in Southern California, Candy Chang, challenged athletes, disability issues, dreams, Life List, mobility assistance dog, MS, multiple sclerosis, New York City Marathon, No Opportunity Wasted, Phil Keoghan, physical rehabilitation, physical therapy, poetry, PSA, Public Service Announcement, recumbent trike, service dog, service dogs, Team Leary Firefighters Foundation, TED Fellow, TED Talks
Talk about timing and coincidences! I published a post 2 days ago about Life Lists and Phil Keoghan’s “No Opportunity Wasted” philosophy, which inspired me to quit putting off a dream I’ve been wanting to realize: completing the Bike MS Coastal Challenge in Southern California. Since the unexpected deaths of two of my friends, both of whom were not much older than I am, I’ve been especially aware of the unpredictability of life and the foolhardiness of believing I have plenty of time to accomplish all that I hope and plan (which I go into much more fully in the previous post). Yesterday I received the weekly recommendations for TED Talks via email and as I attempted to scroll past that email to another I’d been waiting for, I inadvertently opened the TED email and, somehow, simultaneously started one of the videos within. All of a sudden the words Before I die I want to leaped at me with spine-straightening sound and bright colors dancing on my desktop monitor! I half-gasped/half-squealed and nearly fell out of my office chair. Seriously, I jumped so violently I scattered two cats off a nearby bookshelf and my service dog yelped from sleep and then came to my side ready to save me from whatever danger had caused me to act snake-bitten.
Sometimes the universe is downright unnerving and startling with its insistence and the unexpected means used to deliver messages you’re not supposed to miss or forget or take lightly. Via books and music and movies, the deaths of people I care about, an incredibly close-call driving on I-45 just the day before my birthday, and now, packaged inside of an email. I keep being told in one way after another, Life is fragile, life is short, make today count. The universe continues to reintroduce and reinforce the message, so I sat back and restarted the TED Talk video and as I watched I became, in turns, engaged, enchanted, excited, grief-stricken, grateful, inspired, convicted, and grateful all over again. So thank you, Universe, you may be acting rather stalkery and doomsdayish of late, you’ve leveled me with loss and you’ve managed to scare the bejesus out of me more than once, but this Talk is exactly the kind of thing I love.
A woman in New Orleans created a humongous blackboard out of the walls of an abandoned building near her home, then wrote out “Before I die I want to _____.” over and over again so that her friends and family, neighbors and tourists and total strangers could take pieces of chalk and fill in the blank lines with their wishes, goals, dreams and musings.
To my way of thinking, this is an innovative, interactive and empowering form of collaborative poetry! For some, it’s a hands-on-cooperative and athletic endeavor, as well 🙂
The speaker, a TED Fellow, is Candy Chang.
She’s passionate and humble, a seeker, a visionary and change-maker. In the delivery of her narrative, which includes sharing her grief over a lost loved one – and through the tears she cannot stem or conceal for a brief portion of the telling – she’s vulnerable and transparent, allowing us to connect with her in a profound way. Grief is universal, but our experience of it is unique. Sharing our individual journeys of universal experiences binds us closer together, I believe. That kind of “intimacy”can be transformative, the fertile ground from which compassion, admiration and appreciation – for ourselves and for each other – takes deep root and thrives. I witness this repeatedly in creative writing workshops; that kind of connection is what I loved best about acting.
Chang’s motivation for creating this bigger-than-life-sized community art-story was born from one of the most personal and provocative experiences we, as humans, know: someone she loved died unexpectedly. (sound familiar?)
But, here, let me allow her to tell you what transpired.
I feel so blessed to have seen and heard this TED Talk by Candy Chang, to have had it land in my Inbox exactly when it did. If that’s not serendipity, seriously folks, I don’t know what is. I count myself privileged to know Chang’s story and I want to be a part of the next chapters, capitalize on the fertile ground of connection she created and nurtured – so I’m going to fill in that blank spot of white chalk line with my own words and wishes. From yesterday’s post, you already know some of the things I want to do and places I want to go, but I’m going to share with you two more entries from my Life List, two pretty humongous goals. So big, in fact, that I’m irrationally worried, actually afraid to put these wish-dreams out into the world (even though I know that’s the very action that’s called for to begin the process of realizing the goals). I think I’m trepidatious because these two dreams are so dear to me, so much about who I am and what I believe in. Some of my goals, like finishing a book, completing every mile of an MS 150 (via recumbent trike) and participating with Team Leary Firefighters Foundation in the New York City Marathon (in the handcycle division) every year I’m physically able – a lot of people have similar, if not identical goals on their lists (save the trike and handcycle part, I mean!). These two new wish-dreams feel private, even though I realize they can’t stay that way if I mean to make them happen. Perhaps I hold them close because, unlike the MS 150 or a marathon, they probably don’t appear on anybody else’s Life List, might, in fact, be utterly unique to me alone. If I fail to make them happen, I will absolutely have regrets. But then I guess being courageous with the entries on your Life List is to risk failure. The bigger you dare to dream, the more disappointment if you fail. Wishing and dreaming is easy, but investing in those wishes and dreams, owning them and giving everything you have within you to see them realized, that can be scary as hell. But then again, the things I’ve accomplished that mean the most to me are the experiences wherein I was terrified off and on the whole way through. And I don’t regret that risking in the least. Sometimes terror, when you funnel that white-hot nerve-jangling energy, can ferry you farther than desire and determination combined.
But first let me say, Candy Chang, I’m truly sorry for the loss of your friend, who was like a mother to you. I have lost my mother, and I have lost the woman who was more of a mother to me than my mother was able to be. That loss of unconditional motherly love is one of the gravest forms of loss I’ve known in my lifetime. Thank you for taking your grief and making of it something bright and fresh and compelling, something that wakes us up to the precious brevity of our lives and makes us put into words – like a declaration and a promise – what we want to do before it’s too late. Thank you for sharing your story on the TED stage, so that it could be sent to my computer screen (even if the way of it did almost maim me and give the cats cardiac arrest!). Thank you for being so brave, bold and generous with your art. Thank you for the gracious invitation and warm welcome, for encouraging all of us to be brave, bold and generous creators of dreams for the art-story of our lives. Thank you, again, for asking the question. Here’s my answer.
Before I die I want to produce a Public Service Announcement illustrating that the ADA provides & protects the rights of access & accommodation to persons with disabilities who are partnered with trained service dogs. People with intellectual, emotional & physical handicaps are routinely harassed & refused entry/service by shops, eateries, theme parks, places of lodging; because of their service dogs, people are denied transportation from buses, planes & taxis every day in our country. I believe a PSA would educate Americans, raise awareness & sensitivity, and stamp out this disgraceful form of discrimination against people with disabilities and the devoted animals who serve them.
Before I die I want to form a non-profit that inspires people with illness and/or disability to cycle, specifically via recumbent trikes, which can be foot or hand powered or a combination of both. I’ll have a stable of various trike models & transport them to hospitals, rehab facilities & VA centers to let people try them out. I’ll host regular group rides & hold training clinics. There’ll be a fund to help those in financial need purchase trikes, allow cyclists to travel to competitive/fundraising events and afford required equipment modifications. We’ll collect & share our stories in the hopes of inspiring others (schools, community centers, etc.); we’ll advocate for inclusion in events with able-bodied athletes (marathons, bike races) and for equal representation at the Paralympic Games. We’ll cheer one another on and go on adventures, exploring newly-discovered trails, taking charge of roads we never would’ve tackled up-close if we hadn’t claimed or reclaimed cycling. Instead of feeling sick or slow, damaged or less than, we’ll pedal our way to vibrant and vital, so capable, confident and exuberant that on-lookers will be dazzled by our obvious, complete beauty. Any illnesses or disabilities we may have will vanish into stealth-mode when we power our own versions of 3-wheeled flight.
I have multiple sclerosis & the real difference-makers in my life-with-MS are my mobility assistance dog & my recumbent trike. Before I die I will make a difference in the lives of others who have been impacted with illness and disability. I will share my story, my time and experience with the hope of giving people whatever motivation, information, tools and resources they need to empower themselves to live the healthiest, fullest, most fun-filled and independent lives possible. I want those whose lives would be bettered by partnering with service animals to know every option available to them for acquiring a service animal; I want to offer support filling out applications and facilitating connections with trainers and organizations. I would love to create a way for people with service dogs to be in touch with volunteers willing to walk their dogs and handle vet visits on those occasions when a person’s illness/disability prevents them from attending to the needs of their service dogs. I think we need a version of Amber Alerts for service dogs, a way to notify the public and all first responders to be vigilant to lost service dogs, because when someone is separated from her service dog, she is separated from her means of security and independence, and in the case of alert animals for diabetes and seizures, a person without her service dog is at greater risk of health crisis. People partnered with service animals should be welcomed & accommodated wherever they go, because the “going” is often a harrowing challenge already. Before I die I will do everything I can to eradicate ignorance of the ADA’s provision for the rights of people with disabilities and their service animals. I want anyone who might be enabled to cycle with a recumbent trike to have access to one & the support needed to get out & ride – for exercise or to compete, to connect w/family & community, to know the freedom, independence & fierce joy cycling brings. Before I die I will do everything I can to make sure everyone knows that if you can push with one foot – even a prosthetic foot – and have one upper limb to control a combination steering/braking handle, more likely than not, you can ride a recumbent trike.
* * *
So there, two more goals spoken “out loud.” Kind of like drawing the plans for your dream-house. Like registering for the Bike MS Coastal Challenge in Southern California – please support me if you’re able! – and booking the flight that will deliver you to the Starting Line; you haven’t left your own street yet, but you can imagine the Finish Line waiting for you with open arms. Less like bargain hunting; more like a shopping expedition for something that has no substitute. Less like a balloon let go into the heavens; more like a hunting dog set loose on a scent-trail. Less like a message in a glass bottle dropped in outbound ocean waves; more like a carrier pigeon sent with declarations of devotion, asking for a hand in matrimony.
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I set out to do a search to find out if my recumbent trike would be an ADA recognized mobility aid and therefore allowed on buses and in shops, etc…and it lead me here to your blog. Thank you for providing such a refreshing look at living – really LIVING – life with a disability. The other couldn’t-do-without that you mention is your service dog. Do you have any advice for someone who could benefit greatly from having a service dog…but does not have the funds to spare for a professionally trained animal…and doesn’t know where to start?
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