Disabling Life Autopilot

I have found this post difficult to write. Not because I don’t have incredible things to say about 2012, quite the contrary. It’s that I don’t believe I have fully digested the lessons of 2012.

I didn’t realize I had been gathering fuel for this project for 6 year, and all I needed was ignition. That spark came Dec 13, 2011. I received an email from Susan Mees from WEGO health.

Dear Marissa,

I’m writing to let you know that you have been nominated for one of our 2011Health Activist Awards by someone in your community. The first-ever Health Activist Awards will recognize Health Activists for the great things they’ve accomplished this year. Your nomination has put you in the running to win an Award. Congratulations!

An award? Wow. At that point,  I had seen the blog as a personal diary. No one in my life had willingly sat me down and wanted to hear my version of how my health derailed my life. Sure, I saw a few therapist, but that was me reaching out for help. No one had reached out in the way I had needed them too. I was on autopilot, driving on the wrong side of the highway, praying for a head-on collision and no one knew it!

wet road

photo: freedigitalphotos.net

The blog became my mentor. I wrote, it didn’t judge, and I wrote some more. I didn’t have a direction for the blog, or want to turn the blog into an affiliate money making machine! LOL. I needed this blog. I envisioned one spectator out there that was interested in hearing about my story. I wrote to that one witness.

I was fully engrossed with MYSELF!

I only saw MY story, MY journey, MY tragedy, MY hurt, MY pain, MY grief, MY loss!

I was growing and purging emotionally in 2011, but something was missing! I had no clue how to turn off the cruise control of fear. I had worked myself through the stages of grief with assistance of a therapist, but I was AFRIAD! NOW WHAT? How do I live a life with a hidden disability?

The email from WEGO health contained a link to additional awards and nominees. I began following the nomination and award process and found myself devouring each nominee and their story. I became obsessed with their journey’s and how they were living despite chronic illness.

Dec 15, 2011 blog post: Reflection, monition, idea, execution…

For a moment, I found myself lost in another person’s story and passion. After reading several nominees blogs, I had a thought. Could a shift in focus away from vestibular struggles help me through my vestibular struggles? Educating myself on other medical conditions and focusing on another person’s journey may be the best way for me to pull through my own condition.

Dec 18, 2011, I put together a video blog.

The 12-12-12 project was birthed and I got to work.

It wasn’t about MY story, MY journey, MY tragedy, MY hurt, MY pain, MY grief, MY loss!

It was about Their story, Their journey, Their tragedy, Their hurt, Their pain, Their grief, Their loss!

I became the person I needed that never came. I wanted to hear their stories, learn about their conditions and spread awareness! I became so invested in this project that I was often distracted by my own personal struggles living a vestibular disorder.

If I felt fatigued, I would think of Kim and her struggles living with a Budd- Chiari Syndrome, and the fatigue that engulfs her.

If I didn’t want to walk for exercise, I would think of Peachy living with a form of arthritis called Ankylosing spondylitis that requires her to exercise to maintain flexibility in her joints.

If I didn’t want to take a shower because I was down and depressed, I would think of my dear friend Blake. He would love to hop out of his wheelchair and jump into the shower, but Spinal Muscular Atrophy has taken that from him.

If I could choose a single lesson from this project to share with you, it would be this….

Actively search for and wholeheartedly listen to another persons story. You will create a synergy of emotional healing for the both of you! There is power in numbers.

Thank you to EACH project member for opening yourselves up to share your story.

January: Blake Watson
Condition: Spinal Muscular Atrophy

February: Kim M.
Condition: Budd-Chiari Syndrome

March: Amy Gurowitz
Condition: MS

April: Rhiann Johns ( Thank you to Mrs. Johns!:)
Condition: Long-standing brain stem lesion and spastic paraparesis

May: Sara Gorman
Condition: Lupus

June: Dale Lehn
Condition: Chronic Pain

July: Peachy
Condition: Ankylosing spondylitis

August: Sarah Levis
Condition: Arteriovenous malformations (AVM)

September: Sarah Mills
Condition: Severe multiple allergies, covering asthma, hay fever, eczema, food allergies and Multiple Chemical Sensitivity (MCS)

October and November: Andi and Jett Durkin
Condition: Down Syndrome

December: Pam Sloate
Condition: Dystonia

From the bottom of my heart, I love you all and  THANK YOU for disabling my life autopilot, putting me back on the right side of the road, and keeping me from a head on collision.

Much love,
Marissa

Podcast With 12-12-12 Project Member Pam Sloate-Dystonia

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Pam opens up about her experience living with Dystonia since age 8 1/2. She talks openly about Dystonia, grief & loss, and maintaing a positive attitude. She shares SOME VERY important life lessons! It’s a MUST LISTEN.

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Much love,
Marissa

P.S. Pam, thank you for stepping outside of yourself to do this interview. I love you girl!

Accessibility Friendly Website And Hero Of The Week!

I stumbled upon an accessibility hero this week, and his name is Eddie Yu.

Allow me to set the scene…

It’s midnight, and I couldn’t sleep. I began filtering through saved bookmarks trolling websites looking for career direction.

One of the bookmarks led me to Eddie’s website.

Before we get ANY DEEPER into the story, it makes sense to provide you with context.

For those that don’t know I suffer from a vestibular (balance) dysfunction which has left me with 24 hour disequilibrium and moments of vertigo.

These symptoms are NOT FRIENDLY for working in a standard 8-5 office environment. I realize I am going to have to find an EXTREMELY FLEXIBLE CAREER working from home, hence the reason for trolling work-from -home websites and blogs.

With those small details out of the way, let’s press on.

Landing on Eddie’s website IMMEDIATELY reminded me of my limitations.

I couldn’t  absorb ANY of the content! WHY? The background was moving. Remember that vestibular dysfunction I talked about earlier? The site was so visually oriented that it was provoking symptoms such as nausea, disorientation and mental confusion.

Eddie’s site before the adjustment (Motion Alert: heads up vestibular folks!)

NORMALLY when I’m greeted with heavy visual movement on websites I move on. Maybe because it was approaching 1:00am and I was tired and annoyed by the movement that I took direct action.

I jumped on twitter and began typing away…

Twitter messages to Eddie altering his that his content was not accessible to me because of my vestibular  disability

 

After I realized what I set into motion I became nervous. I started thinking…

“Who am I to ask someone to change their website?”

“Majority of people can view his site with no problem, Marissa, let it be!”

I even vented my frustrations to my vestibular support group and via direct message to a true accessibility expert.

But as fate would have it Eddie was prompt and kind in his response.

Eddie's twitter response to looking into the issue.

Eddie’s positive response made me feel guilty. INTERESTING, because if he dismissed or ignored me, I would have chalked it up as him being a jerk and moved on.

I was sound asleep when Eddie sent the following tweet…

Eddie's twiiter response stating the problem was addressed with a pause/play button

Rough night sleeping, woke up late, feeling yucky, BUT ALL THAT CHANGED when I saw the tweet that Eddie and his team had come up with a solution!

I didn’t even check out the solution! I yelled out to Babe telling him how great I thought Eddie was!

“BABE… he didn’t even have to respond!”

I EAGERLY headed to the site and the solution didn’t work.

“Babe… should I just drop it? It’s enough that he even responded.”

Babe encouraged me to respond.

I created a quick video for Eddie and team to show that I was not seeing the fix.

Eddie’s twitter response….

Eddie's twitter response alerting me of  his user-friendly changes.

If you NOW check out Eddie’s site you will see that he was ELIMINATED THE MOVEMENT  A-N-D created different background patterns for the user to choose from.

WHOOP! Victory. I can now choose the pattern that is the least visually bothersome to me, and NOW I can read the content.

SO… if you are interested in learning form a man with strong business and entrepreneurial acumen with a  great heart, please check out Eddie Yu’s website.

Connect with Eddie via Twitter. Don’t hesitate to shoot him a tweet and tell him how AWESOME he is! :)

Much love,
Marissa

P.S. Please note I am not an accessibility expert.  I am just a gal with a disability trying to make sure the web is accessible to those with vestibular disorders!

12-12-12 The Lesson: Life may go different than planned

I can’t imagine a world where people plan and prepare to get sick.

MOST OF US travel through life at the speed of a hamster on a wheel.

You become bombarded by the stresses of life and IF YOUR SELF AWARE you recognize the importance of slowing down and appreciating memorable moments.

When your life becomes derailed by an illness you may entertain the thought that LIFE IS OVER.

But this month’s 12-12-12 project member Sarah Levis reminds us to re-evaluate your “life is over,” thought process…

“Just because your life goes a different way than you planned, it doesn’t mean that it necessarily has to be worse than you planned.”

I hope that this is something that everybody can take something from. I think one of the things that I’ve learned most from what I’ve gone through is just because your life goes a different way than you planned, it doesn’t mean that it necessarily has to be worse than you planned. I definitely haven’t pictured everything that’s happened to me since the stroke happening, but there have certainly been many, many blessings in my life that have come as a direct result of meeting the people that I have, being in the places that I have – even having to live back in my home community, which I didn’t think would ever happen. It is what you make it.

Here, is the reality. Sarah has had two strokes before age 35. She is living with physical disabilities that stemmed from the stroke. She had to go through months of grueling rehabilitation to regain her independence and at the end of the day she still believes that LIFE IS WHAT YOU MAKE OF IT.

Much love,
Marissa

Podcast August 12-12-12 With Project Member Sarah Levis- Brain AVM

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This month’s 12-12-12 project medical podcast with Sarah Levis.

What type of mindset do you have to be in to get up each day, relearning how to walk, feed yourself, brush your teeth and learn to carry on after a brain arteriovenous malformation causes a stroke?

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Sarah gives us a glimpse into her life and openly shares her medical story. Thank you Sarah for taking this journey with me. You are an awesome woman!

Much love,
Marissa

12-12-12 The Lesson: Positive Change

Change scares MOST of us. WHY?

BECAUSE THERE IS A POSSIBILITY WE MAY FEEL…

  • Uncomfortable
  • Scared
  • Out of control
  • Judged

 

When I got sick, I subscribed to two schools of thought…

1.) I have no control over this illness. It has me. I CAN’T change my situation.
2.) My choices are limited, BUT there are plenty of areas of my life I STILL HAVE control over (what I put in my mouth, my at·ti·tude, my personal values and beliefs). I started focusing on what I could control! I realize access to choices means there is a chance I CAN change my situation.

 A POWERFUL SHIFT happened when I moved from I CAN’T to I CAN!

 When I was in the I CAN’T camp, I felt…

  • Uncomfortable
  • Scared
  • Out of control
  • Judged

 

Now enrolled in the I CAN camp, I feel…

  • Uncomfortable
  • Scared
  • Out of control
  • Judged

WHAT?

How can this be? I know what your thinking. “Marissa, what are you talking about? You are still in the same place! Nothing has changed for you.”

Does that mean I am not broke, not sick, or not realistic about my situation? NO.

Let’s face it, I am bordering “JUST ANOTHER STATISTIC “ status. There is a HUGE chance I may not be able to reinvent myself and support myself financially or enjoy a career I am passionate about because of these new limitations.

THE DIFFERENCE IS…

I BELIEVE that I have enough variables in my life that I can control where CHANGE may positively alter my current predicament.

This month’s 12-12-12 lesson has reaffirmed that belief.

Peachy shared with us a lesson that is both critical and relevant.

“Be the change that you wish to see.”

I’m trying to be the change that I wish to see. I wish there was a change in regards to arthritis. I wish there was a change and a cure for arthritis. I wish there was more people who actually understood about this disease and where people didn’t feel isolated and alone and felt freely to talk about it and not feel like people are going to discriminate against them, and make them feel alone. I’m trying to be the positive change in which I hope people who have arthritis can see.

Peachy listed VERY SPECIFIC areas in her life where she doesn’t have much control over. BUT she is grabbing onto the variables in her life that she has control over and that she BELIEVES she can actively change.

She is positively changing the world around her by being the best version of herself.

Here is a link to this month’s 12-12-12 podcast interview with Peachy.

Peachy! You are a blessing and THANK YOU for reaffirming the power of positive change!

Much love,
Marissa

P.S. Bust out one of your devices or go old school on me and use paper and pencil. Jot down one area of your life you have control over mentally or physically.

Example: Are you judgmental? Do you see someone walking down the street and you are quick to judge them? “Oh my, what was she thinking wearing that? Oh no she didn’t!”

Well guess what? That is an area of your life you have control over! Whatever you decide, let that be your start to positive growth. You will soon find there are many areas where positive change is possible.  You will start to experience personal growth AND THAT will instill a belief that positive change is possible for you.  It might hurt. You will most likely resist. You may fail. And that is when you know you are on your way to producing positive change. You got this!

Arthritis Foundation App Encourages Community Interaction

THANK YOU App Culture.

Within seconds of downloading the Arthritis Foundation Tip Share App, I HAD ACCESS into a microcosm of the arthritis community.

FANTASTIC idea. A peer-to-peer app that allows community members to share tips helping each other manage arthritis.

An AWESOME feature is the ability to filter questions based on arthritis types.

I saw posts ranging from supplementation questions to alerting members of the Arthritis Foundation aquatics program.

Congrats Arthritis Foundation for using the latest technologies to connect your community!

I took a few screenshots for ya…

Arthritis Foundation App Screenshot 1

 

Arthritis Foundation App Screenshot 2

Much love,
Marissa

12-12-12 The Lesson: Major Life Lesson Only 4 Words Long?

Let’s be HONEST with each other…LIFE chronic illness CAN and WILL put you in some sticky situations physically and mentally. How many times have you felt trapped by your situation? Once.. twice… more times than you CAN COUNT!

12-12-12 project member Dale shares a lesson that may be mighty familiar to you (Thank you Gram) YET…this time it felt wonderfully different. If you have not checked out the podcast it’s well worth the listen.

4 simple, yet POWERFUL words… THIS TOO SHALL PASS!

 It’s a lesson that I’ve learned a long time ago, and it’s something that’s key for me in how I am both with my pain and my condition of being paralyzed. When I get into a difficult moment, just knowing that this too shall pass. So many of us concentrate on those difficult moments and we obsess on them and they become overbearing to our ability to move forward. They slow us down or hinder us from whatever is happening around us. Just whenever you get hit with a difficult situation, just realize this too shall pass. It’s only a momentary thing. Our life is a journey, it’s a moment-by-moment journey. Live in the moment, and understand that the next moment will be different.

Much love,
Marissa

Podcast June 12-12-12 With Project Member Dale Lehn

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Are you STRUGGLING with acceptance? Dale opens up, sharing an honest and beautiful perspective on acceptance.

THANK YOU Dale for being open to taking this journey with me!

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Much love,
Marissa

Building An Inclusive Web For All…WHOOP WHOOP

I believe technology is a tool that can tip the balances in how people produce and participate in society. Especially the internet with its far reach. However, these tools are not often built in a way that allows all users to equally participate.

Can I get an AMEN? Someone that actually speaks my language!

How often do you get a chance to complain (to someone outside your community… who actually cares?) about annoying blinking lights, flashing animations, optical illusions, and all the crazy visual disturbances on the web?

Hmmmm… NEVER!

Maybe you don’t have a vestibular issue (Thank God!), BUT you want to talk about the kick a** web applications that are allowing you to connect and access the web.

Accessibility evangelist Gregory Tarnoff  cares about your experiences on the web…GOOD or  BAD! 

Take him up on his offer and fill out this form

Have further questions? Hit Greg up:

Greg’s Twitter: @tashitachog

Greg’s Blog: http://tarnoff.info

Much love,
Marissa

P.S. When someone hands you the mic… USE IT!