Paying it Forward!!

Paying it forward always pays off.

In April I started a crowdfunding campaign for Can Do Canines through Indegogo.  I made your classic “note card” video where I didn’t say a word except for a background song and two and a half minutes of my life story.

The outpouring of donations was surprising.  Matt and his mom fought hard to be the first to donate (Matt won!).

The donations started to trickle in… suddenly there were names I didn’t know.  I am nosey by nature so I started to sniff around.  Matt’s dad’s boss and clients were donating… watching my video… feeling moved enough to help in my efforts to pay it forward.

Suddenly I had exceeded $2,000 with 19 contributions.  I was stunned.  I couldn’t wait to write out the check and present it to Can Do when I met my match.

When I got the email inviting me to meet Phyllis I wrote out the check and included a letter with the video URL so if anyone was curious they could look.

Little did I know I would soon have my photo taken, being hugged, and yesterday getting a call from the Executive Director, Alan Peters, inviting me to do a short presentation at the next board meeting.  Can Do is hoping to start a Pay it Forward program and want to use me as a jumping board for the program.

Not only was I honored, I was humbled.  It can take up to, or exceed $25,000 to raise ONE pup.  These aren’t just pet dogs, they are companions, they are best friends, they save our lives.  I was proud of my amount, but had the thought more than once, it’s not nearly enough… it’s not nearly enough to make a “difference”.  Was I ever wrong?

It taught me a valuable life lesson.  You never know what impact you are going to have.  You never know how paying it forward is going to pay off.

I would do anything for this organization.  Which is why Matt and I have already been involved in some events, are planning to participate in the mile walk called the Can Do Woofaroo in September and volunteering at the dog age at Ren Fest this year.  I am super pumped Elli and Nick are going to be joining us!!

The purpose of this post is to try to get this point across.  Paying it forward ALWAYS pays off.  A huge thank you to those who donated.

If you would like to support this organization, please check out my fundraising page for the Can Do Woofaroo at: http://candowoofaroo.org/meniereswarrior#.VaqRQPlVhBc and donate (or join our team and walk with us!!)… literally $1 goes a long way when it comes to this organization.  They survive on generous people to make these precious gifts happen.

MW

6 things to remember about invisible illness

6 Things You Must Know

About

The Disabilities We Can’t See

Now I’m a Warrior

All the pain and the truth
I wear like a battle wound
So ashamed, so confused
I was broken and bruised

Now I’m a warrior
Now I’ve got thicker skin
I’m a warrior
I’m stronger than I’ve ever been
And my armor, is made of steel, you can’t get in
I’m a warrior
And you can never hurt me again

-Demi Lovato “Warrior” lyric excerpt.

Adjusting

Matt got a new job, which is incredible.  I know it has taken some of the financial weight off of his shoulders.  He is out of the house for twelve hours a day, back to working five days a week.

It has certainly been an adjustment for the both of us.

His previous employer was wonderful in letting him take time off to help me out if I needed it.  He was working part-time and only four days a week.  This enabled him to be with me for almost all of my appointments, he was home by 3:30 or 4:00 p.m. every day.

We were able to spend a lot of time together.  He could check his phone regularly, so he would know when I was falling at home.  Now sometimes it’s hours before we can talk for him to know I fell and hurt my knee, elbow, hand, ankle… or all of the above.  One day I missed the last stair and landed on my back – had the air knocked out of me.  As I laid there, gasping for air, I had a profound moment of fear.  I knew I wasn’t dying, but I had the thought, I could fall, crack my head open, and bleed out.  No one would have a clue.

A couple of weeks ago he mentioned how proud he was of me for making this adjustment so well.  Of course, it brought me immediately to tears.  He is so thoughtful.  I know he worries about me.  All of our partners/spouses/caregivers worry about us when they aren’t home.

Somehow we get used to falling over, bruises all over – we forget how those who understand us worry.

We all have to adjust, sometimes daily.  No two days are ever the same for me, even to many they would look pretty similar.

MW

Validation

Validation.

It’s what we all crave isn’t it?

The moment when someone acknowledges our accomplishments.  That moment when someone acknowledges our suffering.  It’s a beautiful moment.

The difficult moments come when you miss that validation.  I called a member of my family about the exciting news I was accepted into the assistance dog program and they simply said, “I know hundreds of people who really need a service dog.”  Implying that someone like me doesn’t “really need” one.  My mom always says how irritating it is that some who see me at most, four times a year, knows enough to decide what my life is truly like.

I don’t expect strangers or even acquaintances to get me.  I don’t even expect some of my best friends to get it, but I do expect family (both blood and chosen) to at least want to understand what the hell I go through.

People have no idea how much time I spend trying for validation.

There are some people who no matter how hard I try to educate, they just don’t want to understand me.  Probably because I “look” fine.  If I had cancer or a flesh eating disease they would have to understand because it would be in their faces, and it’s socially required to care deeply about these external disabilities.

When you have an invisible one though, there isn’t as great a need to understand, because as long as I put on my most dazzling smile it doesn’t exist.

Maybe I just need a better attitude, maybe I will never get through to some people.  But then why subject myself to it?  Phyllis will change my life.  Give me back independence, confidence, freedom… so it hurt deeply when certain individuals were shocked or didn’t deem me worthy of such a gift.  It won’t stop hurting either.  No matter how badass I try to come across.  I cried about it when I go off the phone with them and I cry about it writing this now.

Matt tells me it’s a great time to educate people… I totally agree, but when it’s family, putting your hurt aside to explain for the 651,500,284th time what Meniere’s Disease is, it stops being a “teachable moment.”  It’s picking at an open wound.  It’s beating a dead horse.

This is probably coming across as crass, or blunt.  But it’s the world many of us chronics live in.  We spend so much time seeking validation, for the good, bad, and ugly of this disease.  We find validation in the strangest ways sometimes.  I have such a great group of support from fellow suffers, from here, from Facebook, and from my face to face support group.

I truly don’t expect people to be experts on my disease.  I just ask they believe me, celebrate the great moments and validate the bad ones.  There is nothing better than having someone acknowledge what you are experiencing.

MW

PHYLLIS

Hello everyone,

It’s been a long time since I wrote.  There has been so much going on in my life it is hard to keep up.  I am in a difficult course for school so that is eating up a lot of computer spoons – you know how it goes.

I threw a surprise birthday party for my mother’s 60th birthday.  It was exhausting, but turned out perfectly.  After the party was over and we were sitting around the fire, Elli and Nick announced they want to Matt and I to be Chevelle’s godparents.  I was so touched and overcome with emotion, it was really a sweet gesture and we of course, were honored to be the godparents to an angel.

On Monday I met my assistance dog, whose name is Phyllis.  She is a two year old black lab retriever.

Phyllis2

Phyllis1

There are several types of tasks Phyllis will be able to assist me with.  Most importantly, helping me up when I fall, retrieving items I drop, an emergency phone, a cane, and help with laundry.

With every amazing accomplishment comes the negativity and I think it’s important I share it, as many of us feel so alone in these situations.  I have had a few family members be shocked an organization would give “someone like me” an assistance dog.  It’s the catch 22, if I were in a wheelchair or missing a limb it would be obvious why I would need a service dog.  But I “look” normal, so they question my authenticity, my intentions… more on that in next post.

For now, I am celebrating this exciting time of my life.

MW