Angels Among Us

“I have seen so many van fundraisers crash and burn…”

Julie wrote to me October 4th, 2014.

“The reason they failed is they didn’t have your friends,” I confidently stated.  Sometimes my words get ahead of me.  A twinge of fear splintered down my spine after I sent the email.  “I am not going to let you think about this too long.  We have to get on this soon.”  In my heart I asked if I couldn’t make it happen, could the failure dissolve the friendship.  I elected to take the chance because the stakes were too high not to act.

“How much work could it take to raise a few thousand dollars?  We’ll find some dealership willing to get rid of some cargo van and have the accessibility ramp strapped on for a few hundred,” I thought to myself.

I wrote an email, got it approved by Julie, and sent it out to almost eighty Facebook friends.

Dear FVHS Friends,

I am writing this on behalf of our friend Julie Jones. Julie is a staple (maybe a glue) of our FVHS Theater/Choir “experience. While I became aware of Julie outside of theater when she ran over my foot as she shifted from fifth to sixth gear, we have all grown to love her for so many reasons. Julie is a talented writer, advocate, and cheerleader for anyone who needs a boost.

I am asking you to give a little of your time to accomplish something that needs to get taken care of by us. Julie has Spinal Muscular Atrophy. I am no expert or even a novice at describing what SMA is, I can tell you that the experience is devastating to the person and the loved ones.

SMA can cause numerous critical health conditions, which we have learned from being around Julie, are not her defining characteristics. Some days are worse than others and even the “good” days are exhausting. These “limitations” only bolster Julie’s loyalty as a friend, a contributor to positivity, and a fierce sense of humor.

Each of you have talents – specializations- gifts….we need you!

The twenty-five year old van converted to transfer her wheelchair is the only method to get her around. Well, it was the only realistic way. The van has finally broken beyond repair.

Julie is Not one to live the lavish life, the van’s air conditioning had gone out years ago. Mechanically, Julie’s mother & father had to strategize the best routes to Specialist appointments to bear the least burden on the van and keep Julie from becoming physically overwhelmed.

Julie is articulate, dynamic, powerful, strong, hilarious, thoughtful, spiritual, and worthy of our attention.

We need a group of people willing to coordinate, collaborate, innovate, and a bunch of other words I had to look up on Thesaurus.com Julie is not a charity case and certainly does not wish to be pitied. Honestly, in the time I’ve known her, she has conducted herself with honor, pride, and eloquence.  

We need some dedicated folks willing to create a campaign to replace “Old Smokey” (as Julie fondly referred to it). Internet research is being worked on to find a used van with wheelchair accommodations. We have estimated a dollar amount and a GoFundMe page is in the works.

THE REASON we need a group of people, is Julie cannot do this endeavor on her own. This is a serious need that has a time urgency.

We need your particular talent & creative resources. Whatever it is that you know how to do, we need it. We need someone to organize, create a campaign, reach out to people, search the InterWebs, UpLoad YouTube videos or the little tricks you’ve learned over the years. Maybe you know someone in FV or the area who can film & put together a simple YouTube video and/or channel. Maybe you are an artist or you are good on the phone…we need you!

Maybe you are a Spoke’s Model (Barela),, know someone at a dealership who is willing to donate a van, you can write & sing a song (yeah, I just said that), or know someone who knows someone who is willing to help. 

Please respond to the group, to Julie, or me (DuncanLMSW@gmail.com) The plan is to meet up via phone calls, texts, emails, Facebook, and any other way that is good for you. 

The goal is reachable, the results are tangible, and the choice is yours.    

From that original email, an old friend who is an experienced crooner responded with floating the idea of rewriting the Paul McCartney song, “Band On The Run” to “Van Doesn’t Run.”  The campaign came to life.  Michael lived on the East Coast.  Julie lived on the West Coast.  I lived somewhere in between.

Several other friends stepped forward with ideas and the willingness to help.  Barela, a graphic artist and maven, offered his services.Although he had one full time and two part time jobs, he volunteered to take a huge lead.

I started to call organizations, leagues, associations, collectives, schools, and any other institution I could Google.  I knew I would hear “no” but I did not give up.  I had no feet on the ground near Julie.

Fredricka, retired and lived around the corner from Julie, began an old fashion, reliable ground campaign.  She contacted all the groups she knew and blanketed the area with flyers Chris designed.  I am not exactly certain how many hours she spent but she was definitely a Godsend.

A good friend, Rudd, offered studio time if I could find a singer to record “Van Doesn’t Run”.  A local singer offered and then cancelled.  Later the singer scheduled and then cancelled, again.

Thoughtful of the resources, it was suggested that a novella Julie wrote be an incentive and a publishing company did the layout for free.

The team launched the IndieGoGo fundraiser.  Right off the top, we got a $1000 donation from a Fountain Valley High School alumni.  Steve, the alum, offered the proceeds from his Taco Bell profits on a Saturday.  Lots of angels descended on that Taco Bell to show their support.

Barela’s wife, a talented driven writer/producer/publisher, offered incentives for any donation.

People donated $5 to $500 from across the globe.  Someone we never met nor connected to in anyway donated from an island somewhere in the South Pacific.  We checked the total daily and were astounded by the generosity of friends and strangers.  Two classmates who worked to become a Hollywood actor and writer/director/producer, donated large sums.  They asked their Social Media friends to help out, too.

A caring reporter, employed by the LA Times, began to write an article when the guy who came up with the Van Doesn’t Run idea sent a video clip that was a game changer.

The clip was of him driving and he sang an acappella version of “Van Doesn’t Run” in one take.   It was incredible.  The energy and buzz was intoxicating and contagious.  The donations poured in.  Along with the Likes on our Facebook page, other friends stepped forward to write letters and share Julie’s situation.

People, who wanted to be a part of this movement, joined in.

Rudd, the studio engineer, worked behind the scenes to find a singer to do a studio version of “Van Doesn’t Run” and sent it to me out of the blue.  Rick Urias gave up a few hours to sing the song all for a family he had never met but he could help in his own way.

As we neared twenty thousand dollars, Julie and her father were introduced to an organization that equipped vans with wheelchair accessible hardware.  There was a used one that would meet Julie’s needs and would last but it was over forty thousand dollars.

A whopping $10,000 donation came in from an anonymous donor.  We were speechless.  We called each other, laughed, and cried.  The random acts of kindness of friends and strangers dumbfounded all of us.  Just under our thirty thousand dollar goal, we shot passed our goal by one of the team members.  Fredricka, who had done so much already, decided to bring “it” home.  I can say that for the first time, I knew the feeling of being “overjoyed”.

We clawed and scrapped to meet our new goal of forty thousand dollars.  It is a lofty goal that can take some organizations a whole year to meet these benchmarks.  IndieGoGo gave us sixty days.

Only several grand away, a Texas TV station did a piece about the friendship between Julie and me.   FVHS alumni, Elizabeth & Brian, donated a large sum that was matched by a couple in Texas.

The goal was met in sixty days with a lot of hard work, frustration, gratitude, wonderment, kindness, and a desire to help a family out.

Individuals stepped up who didn’t have to but they showed they cared.  Everyone who gave money, Liked our statuses, shared our page, and gave of themselves will always be angels in my eyes.

We can look at the goal as the miracle but that’s only one aspect.  We were part of something special.  However we could, we brought the thunder to make a difference.

I am most certainly a different giver.  While I used to give to large charities, too often the goal was to see how much the goal can be surpassed than last year’s goal.  It seems like a bottomless pit.  Giving to an individual can change a person’s life.  Several angels kept the team encouraged to continue onward and upward.

I was so blessed to be a part of the campaign.  I got to witness the angels in all of their forms add to the miracle.  I am glad that I could be a part of such a purpose.  Consider the last part of  my original email where I asked if they could write or sing a song.  Imagine if I limited the language.  One idea springboard’d to another.  We all have special talents and gifts.  When we use those gifts for a higher purpose, I think we earn our wings.  You have something to contribute.  All of us have a particular quality that adds value.  You will never know just how you can help until you get involved.

I hope to inspire you to be a part of something that touches your heart.    We need more individuals to join the collective of agents of change.  Taking the time to offer what I have only makes me stronger.

 

 

In the Heart of the Beholder

“You are so inspirational!”

As a person with a disability, it has been explained to me that the phrase is demeaning and I should be offended.  Well meaning, able-bodied individuals express how inspirational certain individuals with disabilities are to them.  The inspired person usually says something to the effect that if they had to deal with that disability, they would kill themselves or never leave their bed.

I am supposed to join lockstep with my brothers & sisters with disabilities.  I will not rebuke such statements.  If you are inspired by me walking with Perry, I am grateful.  If you find my disposition uplifting, I am thankful something I did inspired you.  Even if I really did nothing and they find inspiration, it warms my heart.

The world is filled with soul stealing sadness.  We can choose to see the horrors and tragedies.  It is easier to be overwhelmed in the dark than focus on the light.

As the saying goes, “Rather than curse the darkness, I will light a candle.”

One candle may not be much of a source of light, but the more candles that can be lit; the brighter things will be for everyone.

It may be due to the fact blindness for me is not total darkness.  My blindness is an over abundance of pulsating flashes, puffs of electricity, and swirls of colors.

At the beginning of losing my sight, I fixated on what I could no longer do.  Every article I read had a theme how “Pat never let their disability slow them down.”  Stories like that are unrealistic and set me up for disappointment and frustration.  Even making a cup of java in the morning was a challenge at first.  I couldn’t even start my day without letting my disability get the best of me.

Like everything in life, I gain confidence in what I re-discover I can do.    If this unearthing process inspires you to do more, Amen!

If at the end of my life, people could only say one positive thing about me:  “Chad inspired folks…” then I would say that my life was one well lived.

How many ideas were inspired by a different perspective or point of view?  I think the advocates for disability awareness have taken correctness too far.  Inspiration comes from music, silence, fear, happiness, heartbreak, and the mundane.  Inspiration is in the heart of the beholder.

Who would have thought that Andy Warhol would be inspired by a can of Campbell’s soup but he was motivated to the point to paint it.  Inspiration is energy.  It is excitement.  If something I can say or do gives a person the perseverance to continue forward, then I am overjoyed something I did or wrote brought positive change.

I am going to keep headed on my path in life.  If my journey inspires you or just a detail provides a spark to fight through your struggles, my mission will be accomplished.

A person shared a true tale with me that she recently had too many things go wrong in her life.  It felt like the end was near.  With no options, the person walked around the apartment complex.  Day after day, the person paced the parking lot.  A lack of electricity, job, transportation, food, or hope had her soul restless.

An older lady called out.  “Oh, Honey.  You look like you need a hug.  Come here, Darling.”  The older lady embraced a stranger in need and changed the course of events.  A single candle of hope pierced a world of darkness.  That one interaction lit a path of possibilities.  One person made a difference and, now, I pass the flame to you.  The decision to open myself up, and share stories of hope, only makes me stronger.