Are You Alone?

Health Activist Prompt:


I write about my health because… Reflect on why you write about your health for 15-20 minutes without stopping  (this is yesterday's post...I am cheating a little bit.  I will do today's post later on.)


I am no stranger to being a health activist.  You could say I was born into the role.  My sister has neurofibromatosis, a genetic disorder of the nervous system which causes tumors to form anywhere on the body at any time.  It also gives her learning issues.  As far back as I remember, my sister was "special" and "different."  I didn't have a problem with this; it just was.  In fact, I was drawn to people who were "different," and I had a lot of disabled friends when I was growing up.  I just remembered that everyone made fun of my sister and I hated that.  When I reached out to be the friend to the person with the disability, they were always just as amazing as everyone else.

It was no big shock to myself (or probably anyone else) that I chose to work with the disabled as a career.  What was a shock to me, though, was how badly they were treated by others.  This prompted me to become an even more fierce activist than before. I loved my work and truly respected the people I worked with and for.

So, you'd think that, when my own child showed signs of having a disability, that I'd fall right into the role of activist for her?

Well, Welcome To Holland...

It's not that I wasn't a good or fierce advocate for her; you can bet your ass I was.

I ran to the ends of the Earth for her.

I read everything on Autism and Asperger's that I could get my hands on (at that time there wasn't much).

My family kept telling me "there's nothing wrong with her."  "She's so smart"

(flash-forward 21 years later.  She's still smart, but I think I was right...)

Anyway, I was so alone.  Really, really ALONE.

After a while, I did find support groups, but my kid was never really like their kids.  I have a girl; most Asperger's kids are boys.  At autism support groups, there weren't too many Asperger's parents.  Yet.

And, to top it off, I was split from her father, who also seems to be somehow affected by Autism.

I did it, though.  But if that weren't enough...

I was dropped into another "country"

actually, it felt more like another planet.

When I became sick.

Because: a) I was with a partner who was not supportive (he was actually the opposite of supportive; and b) I couldn't even get an easy-to-understand disease.  no! I had to get some hard-to-diagnose, chronic illness like vestibular dysfunction, which we are not sure exactly why I have and I can't get rid of.

So now, 11+ years into this thing, I am currently stuck in the house, unable to drive, most of my friends don't  see me (thank God for the few who do), trying to do right by my family when I don't know day-to-day if I can stand up straight.

THIS is why I write.

Because otherwise I would explode.

(and so others know they aren't alone in Holland or in their corner of the Universe)

Heal You, Heal Me

Health Activist Prompt:


Superpower Day. If you had a superpower – what would it be? How would you use it?


So, this is one of those topics that people talk about all the time.  And my answer is always the same.

If I had any superpower at all, it would be the power to heal people.

I know that this is not the typical superhero power.  I was all into superheroes when I was a kid.  Spiderman is still my favorite.

But I can't think of one thing to do with super-strength or super-speed or the ability to leap tall buildings in a single bound.

I mean, yeah, I would want to fight crime and all, but crime keeps coming back (isn't that sad?).

But imagine the absolute joy in removing someone's pain and disease forever!

Imagine the delight in knowing their whole life, their family's lives, their friends' lives would be forever healed.

I do.  I'm happy enough when I give my kids or my partner a Tylenol to reduce a fever or a Band-Aid to cover a  cut.

Any amount of suffering that I reduce makes me feel amazing.

To eliminate an illness, to heal a broken bone or quiet a confused mind --

It would be a gift of pure happiness.

Is this a selfish power?  Some might think so.

Don't look so deeply, though.  I don't have such ulterior motives.  It's not a God complex.

Just as I am happy to pass on a smile, a compliment, a hug, an "I love you"

so I'd want to pass this on, too.  To make someone "whole" again.

If I could.  It would be wonderful.

When It's Dark Enough...

Health Activist Prompt:


Quotation Inspiration. Find a quote that inspires you (either positively or negatively) and free write about it for 15 minutes.


"When It's Dark Enough, You Can See the Stars..." - Ralph Waldo Emmerson

Why does this quote inspire me?  Because, the way I see it, it has been dark enough.  Too dark.  Many times over.  But I know I have two choices: give in to the dark or look for the stars.  I choose to look for the stars.

Not gonna lie.  It's not easy.  Sometimes I need reminders about the stars.  I have stumbled around in the blackness and thought I was blind forever.

When weeks turned into months and my feet kept giving out from under me and my head kept buzzing, I saw no stars.

When nobody had answers for why I was as sick as I was, and I sank into depression, my world was dark.

I feel like I've traveled thousands of miles with a candle in a windstorm just to get where I am today, holding a penlight in the middle of the Grand Canyon.

At least I can see the stars out here.

Time In A Bottle

Health Activist Prompt:

Health Time Capsule. Pretend you’re making a time capsule of you & your health focus that won’t be opened until 2112. What’s in it? What would people think of it when they found it?


For people to get the real picture of what is going on with me, they would definitely have to get some of my lovely "B's."  You know the ones.  B's on sticks, B's on checkerboards.  B's floating on my wall.  If I have to keep looking at the letter B, it would make sense that some B's would go into the capsule to give a sense of what my recovery has been about.

My talking timer would be another good addition to the capsule.  It has been a good way to get me to do my VOR (vestibulo-ocular reflex) exercises.  Having the talking feature is like having a coach.  It counts down the seconds in various intervals, keeping me on track.  So, just when I'm starting to sway, it reminds me, "30 seconds, 10 seconds (it skips 20 for some reason), 9, 8, 7, 6, 5, 4. 3. 2. 1 and then the obnoxious noise of my choice plays.  What could be more motivating than that? (hey, my world is small!).

I know I'd stick my Mp3 player in there.  Yes, I'm low-tech...no ipod.  Music will get me happy, though, when nothing else can.  And my choice of songs, very telling.  Some directly from my heart.  Some just full of anger so I can scream my frustration away.  Some so very different from the life I have, the life I didn't plan on.

To really give a picture of me, this laptop would have to go in, too.  I don't know how I could have gotten through this without the Internet.  It has provided me with socialization and support, an outlet for my frustration, a means of expression, a way of knowing I am not alone.  Through the 'net I have found out so much about my condition, how to get help.  I learn just about every day.

Pictures of my family would round out my capsule.  My girls and my partner mean everything to me.  My pets, too; they are with me every moment of every day.

I hope that people would see my capsule and first know how much I value my family.  I don't breathe without their oxygen in mind.  My heart beats for them.

Then, I hope they would know how hard I worked at trying to be "normal."  It wasn't easy.  But I am NOT lazy and this IS real and it's been a long, tiring journey.  Maybe putting together some of the pieces to my puzzle, they'd get the whole picture of who I am.

health activist writer's month challenge

I am always up for a challenge.

I took this challenge last year, but in a more private way.  this year, my blogging has been more consistent and I am very excited to share this with anyone who is interested.

here is the information.  let's go:

Hey everyone - I just wanted to tell you about a new activity I'll be doing this April. The Health Activist Writer's Month Challenge hosted by WEGO Health. I will be writing a post a day for all 30 days. I hope you'll join me in writing every day about health. It's going to be a lot of fun and I'd love to see what you have to say about each of the topics, too. All you have to do to join is sign up here: http://info.wegohealth.com/HAWMC2012 and you'll be able to start posting once April rolls around. Looking forward to writing with you!