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

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

May 12-12-12 Project: The Lesson

small plant coming out of the ground

Image: Sujin Jetkasettakorn

 

This month really impressed upon me the importance of self awareness. In my own experience, I can share that looking within and challenging myself with difficult questions is what helped me move toward acceptance.

This months project member Sara Gorman leaves us with a beautiful lesson.

I will mention a phrase in my book. It’s a little kind of a poem that I came up with that a lot of people have been able to identify with.

The harder I push, the sicker I get. The sicker I get, the less I resemble myself. The less I resemble myself, the harder I push to regain some semblance of who I used to be.

The point is you’ve got to break that cycle. You’re in control…It starts within. It really does. You have to make up your mind that the way you’re doing it right now, pushing through the pain, isn’t working – or it’s not working as well as it should.

Much love,
Marissa

Team Amy

Part of the letter I sent out:

The day after getting this bracelet please wear it for the duration of the day. Throughout your normal daily activities you may be reminded that you are wearing an awareness bracelet. When you think of the bracelet think of Amy and the approximately 2.5 million people across the world that are living with a condition that is attacking their body. MS is a condition, which affects quality of life and often hinders the ability to participate.  Please take a photo of you rocking your awareness bracelet. It can be you in an action shot.  You have free reign. Just know that your photo will be added online to the blog. This show of support and solidarity for Amy and others living with MS is a way for us to contribute and bring awareness to this illness. Thank you again for participating!

Individuals wearing MS awareness bracelet in support of Amy and MS awarness

(Heather, Michelle, Kim, Julie, Ava, Veronica,Blake)

Thank you to those that answered the call and rocked an MS awareness bracelet. You are appreciated!

Much love,
Marissa

March 12-12-12 Project: The Lesson

I have spent this month learning about Multiple Sclerosis. I have gained a great appreciation for those afflicted with this condition. The strength that one must muster to handle the continuos changing nature of this condition is admirable. I was blessed to interview a fierce advocate in Amy Gurowitz.

Amy shared an important lesson this month. You don’t know what you can deal with until you do.

In 1988, I looked at that list and I thought, “Oh my God, I’m never going to be able to deal with this.” Years later when I looked back at that list, I thought, “Oh my gosh, I’ve dealt with pretty much all these things in some fashion or another, and…wow! I never knew I could do it.”

You just never know what life is going to hand you, and what you can deal with. That’s really empowering, I think, in the long run – to know that you can cope with far more than you thought you could.

 

Thank you Amy for being open to sharing your life and experience living with MS! I admire you and I am blessed our lives crossed paths.

 

Much love,
Marissa

MS, You’re Never Gonna Win!

12-12-12 project member Amy Gurowitz daughter Madeline wrote and composed a song about Amy and their lives with MS.

MS, You’re never gonna win, Hold in there mom, I’ll be there to help you.

Madeline, you have a beautiful voice and spirit. You are right “Ms, you’re never gonna win”!

Much love,
Marissa

Participating in #SXSW (update)

Often times life’s negative events and interactions are set on repeat, recycled, replayed, and picked apart for analysis. I want to rewind and replay the kindness I have been extended over the last few weeks. I mentioned Veronica Johnson in a recent blog post. I talked about how she attended an interactive conference known as SXSW. I expressed because of my vestibular issues I most likely would not be able to participate.

Veronica e-mailed daily giving me a play by play of what was taking place at the event. It was like I had my very own news correspondent at the conference. She also shipped me a box filled with swag from the conference!

Let me share the events. I had a rough day and felt a bit down. I even cried on babe’s shoulder. I felt a bit lost and unsure of the future. I let out a good cry and then babe reminded me that I had a package to open. I opened up the package and wow! I felt rejuvenated. Veronica’s act of kindness reminded me the importance of staying in positive moments. I am going to continue to have lows and high’s throughout life. With that said I realize that blessings come from above, and there is a purpose and plan being carried out in my life.

SXSW swag: t-shirts, buttons, etc.

 

I want to thank Veronica for being the best gal ever. This gal is the real deal! Her act of kindness will continue to fuel me to strive to be the best version of myself.

Much love,
Marissa

February 12-12-12 Project: The Lesson

This month’s 12-12-12 project I spent time learning about liver disease and organ donation. This month’s journey has been life and spirit changing. I had the pleasure of interviewing Kim M. who is living with a rare liver disease known as Budd-Chiari Syndrome. I have learned of the importance of organ donation. Check out  OrganDonor.gov to signup to donate a life.

Kim reminded me of a valuable lesson this month. Do not take things for granted, one does not know what tomorrow holds. In love with a special person, tell them. Have a desire to travel? Set a plan in motion to carry out those travel plans. Desiring asking someone special out on a date? Go ahead, ask them out. Need to stand up against a doctor not providing quality care? It is ok to communicate your disapproval. Kim paints a beautiful example of living in the moment:

“We’ll be in the grocery store and he’ll go his way and I go my way and I’ll call him and I’ll be like, “Where are you?” He says, “I’m over here.” I’ll say, “Okay. Love you.” He’s like, “Really? You have to say I love you and I’m going to see you in a minute?” And I will tell him “Yes.” I say “I love you” constantly on the phone. It’s just something that maybe I didn’t do before. Now, I realize what if tomorrow is the day and I didn’t say I love you?”

Special thank you to Kim for being open to sharing her story. Kim, you were a great support to me this month. I’m so glad I got an opportunity to get to know you.

Much love,
Marissa

Podcast: February 12-12-12 Project Member Kim M.

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12-12-12 project member Kim M. From Hope Whispers Podcast interview featuring 12-12-12 project member Kim M.

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About Kim:

Kim was born and raised on a tiny island in Pacific Ocean.  Kwajalein was her home until she graduated from High School in 2000.  She spent the next 5 years working at Walt Disney Worlds Animal Kingdom.  Married her high school sweetheart in 04 and entered the world of motherhood the next year.  Kim’s greatest blessing is her family.  Now a mother of 2 boys parenting is a challenge she enjoys.  She began her love affair with photography shortly after her first son was born.  She loves nature and all things outdoors.  She loves life and tries her best to live each day to the fullest!  She started the blog, Hope Whispers, where she documents living with a rare liver disease.

Condition: Budd-Chiari Syndrome

According to The Merck Manual:

“Budd-Chiari syndrome is caused by blood clots that completely or partially block the large veins that carry blood from the liver (hepatic veins) into the inferior vena cave.”

Connect with Kim:

Twitter: @KMunoz28
Blog: http://kmunozbcs.blogspot.com/

Support Kim:

Help Kim raise much needed funds for her liver transplant. Show your support for Kim by rocking Hope4Kim products. Proceeds will go towards Kim’s transplant fund!

Learn more about Budd-Chiari Syndrome, Liver Disease, Organ Donation:

Budd-Chiari

Liver Disease

Organ Donation

Be sure to check out Kim’s fantastic blog Hope Whispers to learn what it’s like living with Budd-Chiari Syndrome.

Much love,
Marissa

 

Audio Transcript: 

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Gram Supporting Liver Disease Awareness

Project 12-12-12 for the month of February is featuring Kim of Hope Whispers. Kim is living with a rare form of liver disease known as Budd-Chiari Syndrome. Kim is going to need a liver transplant. I am spending the month of February learning more about Kim, liver disease, and liver transplantation.

Gram wearing a liver disease awareness support bracelet  to her doc appt.

My Grandmother AKA Gram, showing support of Kim. Gram is rocking a liver awareness support bracelet to her doctor’s appointment! Go Gram. May you be inspired to learn about liver disease and prevention. Blessings.

Much love,
Marissa