Tag Archives: reflection

January 12-12-12 Project: The Lesson

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January 2012 was an opportunity to set sail on a personal project known as 12 months, 12 journeys, 12 lessons. This month’s project featured a neuromuscular condition known as Spinal Muscular Atrophy. I had an opportunity to learn about the condition, obtaining a glimpse into the life of my friend Blake Watson living with SMA type 2. This month offered an abundance of lessons. It’s difficult to grab hold of just one lesson; there’s one that stands out. Allowing yourself permission to adapt to life’s challenges. Giving yourself time to grow, change, and readjust. Blake eloquently states in the interview.

“Having SMA is all about adapting. I just have to remember that. If something doesn’t work out, instead of just being like, “Well, this isn’t to work out,” I should probably just really creatively think of ways to adapt to make it workout I guess.”

I want to thank Blake Watson for being open to speaking about his personal journey living with SMA. I am blessed to be able to share his personal story with you. I am excited to welcome the months ahead.

Much love,
Marissa

Honoring and Uplifting Estella Sweetman Lopez #smashsma

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The 12-12-12 project has taken me on an educational journey. January 2012, I’m learning about a condition known as Spinal Muscular Atrophy. According to StopSMA.org: Survival Motor Neuron1 produces a protein which is necessary for the survival of certain nerve cells in the spinal cord, referred to as motor neurons. When you have a missing or defective SMN1, your motor neurons are not getting enough protein and that causes the neurons to shrink and eventually die. The inability to use muscles causes muscle weakness, and eventually the muscles will atrophy. The condition is fatal.

As I continue to learn about SMA, a single fact continues to resurface. “SMA is the number one genetic killer of children under two.” Often times I hear a statistic or statement and I become unsure how to rationalize or conceptualize. That has changed.

I recently learned about the passing of an 8 month old, baby girl, by the name of Estella. Estella was diagnosed with SMA1 at a routine 8 week check up. Estella passed away in the arms of her mother on November 13th, 2011 at 1:25pm.
After hearing about Estella’s story, the statistic became very real. Estella’s life was cut short, but her spirit lives on through her parents who are dedicated to bringing awareness and eradicating the disease that took their daughters life.

Estella’s parents want to educate, raise awareness, and prevent another family from enduring the loss and pain of loosing a child to this terrible disease. They have started a petition to the UK government requesting that every woman be offered free genetic screening for the disease.

How can you help Smash SMA?
Please sign the petition.

Learn more about Estella and her legacy:

Twitter
Blog

Much love,
Marissa

Video Blog: 12 Months, 12 Journey’s, 12 Lessons

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httpv://youtu.be/lEHbTVUfqyM

Lesson:  Vanity vs The Message:

Wow, this is raw. No makeup or hair done!:) This was supposed to be a dry run, however, I felt being honest and raw was more important than my look, so I will run with it. This is an addition to previous blog post, Reflection, Nomination, Idea, Execution.

If you want to be part of the 12 months, 12 journey’s, 12 lessons, please contact me!

p.s. I know I don’t live in snow country, however, I dress like I do! Loving my winter scarf.

Much love,
Marissa

Reflection, Nomination, Idea, Execution

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2011 calendar page turned up to show the new year 2012Image: dream designs / FreeDigitalPhotos.net

Intro:

Living with a chronic vestibular disorder, I am reminded daily that I am living with a life altering condition. That daily reminder fuels this blog. It encourages me to find ways to become a better version of myself despite this disorder.

Nomination:

I was recently nominated for the WEGO Health Activist Awards Best Kept Secret. I feel blessed and humbled that someone in my community cast a vote for my nomination (Be sure to nominate your Health Activist Best Kept Secret).

After reviewing the list of nominees, I was taken aback. There are so many wonderful people living with and supporting awareness of various health conditions and disorders.

Idea:

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.

I currently attend 3 doctors visits monthly  These visits make me nervous. I realize vestibular disorders are complex, and in 6 years, I have yet to find a “cure.”! I realize that with each visit, therapy, adjustment, and exam that doesn’t deliver a “cure”, my options are narrowing.

Despite my supportive network, at times I feel alone. What would it feel like to be reminded that I am not alone? To be reminded that there are others in the struggle, and despite their conditions, they are moving in a positive direction.

Execution:

* In 2012, I would like to educate myself monthly on a health condition other than my own.

* I will purchase a T-Shirt monthly supporting a disorder/condition/cause. I will wear that T-Shirt to my 3 doctors visits each month.

* I would like to hold an interview and highlight a disorder/condition/cause each month on Abledis.com.

How can you help? :

If there is a condition or a disorder I should know about, please alert me!

Final thoughts:

2011 has been a year of change and growth. Thank you Lord for your many blessings. I am blessed for the addition of wonderful people that have come into my life this year.  Thank you to my fiance and his family for their unwavering love. Thank you to my family for their support. Special thanks to my gram. Gram you are an inspiration and blessing. Thank you to the doctors that are mentoring and helping me find answers. For the first time since being diagnosed with a vestibular disorder, I am actually welcoming a New Year. Cheers to 2012!

Much love,
Marissa

 

Appreciation Toward My Accessibility Setup

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Marissa sitting alongside her walking sticks reflecting

I was feeling introspective on my walk today. I found myself full of appreciation toward my accessibility setup. I am rocking my new prism glasses and walking long distances with my trekking poles. Armed with my cell phone, glasses and walking sticks, I am able to walk solo around the neighborhood. I found myself loving and appreciating the independence. Cheers to moving in a forward direction!

Much love,
Marissa

More Than A Work Badge?

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What are we holding onto that is keeping us from moving in a forward direction?       (Audio to come)

Marissa's work badge pre-disabilty I have gone through and thrown away pre-disability career memorabilia. From binders to pay-stubs I have purged myself of physical work memories, however, I have been unable to throw away my work badge. Pre-disability and post-disability are in a power struggle. Letting this work badge go and standing in my current truth is scary. Am I ready to let go and address the fear in letting go?

*Please excuse the raw photo. This poor badge has taken a beating!

Much love,
Marissa

We Fight

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We fight to be cared for.
We fight for independence.
We fight for grades.
We fight for love.
We fight ourselves.
We fight each other.
We fight to be understood.
We fight for acceptance.
We fight for what’s right.
We fight to fight.
We fight for employment.
We fight when we’re unemployed.
We fight to keep our homes.
We fight to save our marriages.
We fight to save our relationships.
We fight for quality of life.
We fight systems.
We fight for equality.
We fight to be heard.
We fight for respect.

We are good at the fight, but when do we learn to surrender?

Pay It Forward

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The past two weeks I have been showered with kindness. I have received two packages in the mail.

Contents of package #1
From: Blake Watson
Inside package: Several web design books.
Info: Blake has a condition known as Spinal Muscular Atrophy and he has found that physically holding books has become a struggle. Blake prefers e-books. Blake is supportive of me learning web design and sending his web design books is a lovely gesture.

Collection of web design books blake sent me

Contents of package #2
From: Andy Clarke
Inside Package: New Riders and Lynda.com DVD’s.
Info: After hearing The Big Web Show Podcast, Andy contacted Jeffrey Zeldman asking for my contact info. Andy contacted me and asked for my mailing address. He was kind enough to send me some of his New Riders and Lynda.com DVD titles.

Andy Clarke DVD's he sent

Lesson Learned:
These kind men have offered me gifts of knowledge asking for nothing in return. They exemplify the term “Pay It Forward.” I felt it was important to share this story. Are there  gestures that you can pay it forward to members of your community? These men have taught me a powerful lesson. They didn’t ask if I needed help. I was provided a vehicle, so I can help myself. I can’t wait to pay it forward!

Much love,
Marissa