Life Lessons From The Cemetery

Hanging out in the cemetery does something to you. More specifically, it does something to your inner-spirit.

The cemetery is walking distance from where I’m staying. It’s a place I frequent often, and it’s become part of my walking ritual.

I could take a different route, but I choose to walk through the cemetery as often as possible. Something draws me there.

At first, I thought it was the beautiful landscape. I became convinced it was the solitude I craved. Now, I realize I’m drawn to the cemetery for a different reason.

Today, I found myself being pulled toward a particular tree on the cemetery grounds.

I sat down and was surrounded by hundreds of burial plots. It wasn’t eerie. It was comforting.

Have you been to a cemetery lately?

You’d be amazed how beautiful a cemetery looks during the holiday season.

The living have decorated with Poinsettias, Christmas trees, and an array of festive holiday decorations. It’s breathtaking.

As I sat there, I found myself fixating on one particular burial plot. It was amazing. Christmas tree, ornaments, lights and festive trinkets. It was a Christmas celebration.

Then it hit me, only the living can experience the holiday festivities with their family and friends!

Would this individual trade places with me knowing that I’m living with a chronic illness?

I’m certain he would!

I’m certain he would take on my current health burdens in exchange for being in the presence of the awesome people who honor him in such a publically visual way.

I’ll leave you with this.

On the Christmas tree was a large sign decoration with the word “Hope”.

beautiful visual display of love

I’m convinced the decoration is a positive reminder for all those that stumble upon this post.

Hope:
Hope you find a cure.
Hope you find peace.
Hope you find love.
Hope you find acceptance.
Hope you find…..(whatever makes you appreciate that your still among the living.)

Much love,
Marissa

PS: Walking through this cemetery has changed me. It’s going to be a constant reminder of how blessed I am to be among the living despite chronic illness!

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

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: 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!

Who Cares About Improvement When You Still Feel Like S#*%

Feeling better is the reason you would go through therapy or any health treatment, RIGHT?

Who doesn’t want to show improvement?

Maybe you can relate…

You are deep into therapy or treatment, and each visit comes with its own set of questions.

  • How are your symptoms?
  • Are you feeling better?
  • Where are you on a scale from 1-10?

I GET IT… successes AND failures must be measured.

  • Where are you at now?
  • Are you at a 6?
  • Are you able to recognize what helps reduce your symptoms?

MOST PEOPLE might think twice about spending a decent chunk of their day performing exercises that would cause them to feel worse in hopes they get somewhat better.

It’s crazy. Right? WRONG!

A lesson smacked me upside the head today!

7 years ago when the vertigo and disequilibrium set in, I could not even walk around the block. I felt so nasty I hardly ventured out of the house.

Check out this photo! I am not sure what inspired babe to take this photo of me (SO glad he did. I have something to show ya!)

Marissa in the early days of the vestibular madness  laying on couch rockin sea bands

I am rocking two sea bands and riding out the nausea and room spin.

*Sea-Bands are a bracelet that is supposed to help with nausea and motion sickness.

(I was desperate! I would have tried ANYTHING at that moment in time. I am still open to trying MOST things.)

After the walk today, I glanced down at the pedometer, and it read… 2.147 miles!

Pedometer reading 2 miles

WHAT THE HECK!

It took me 7 YEARS to go from barely making it around the block to being able to walk 2 miles!

I can confidently say I am walking 2 more miles than many able bodied persons.

Do I feel like hell after my walk? YES

Do I struggle throughout the walk? ABSOLUTELY

Has the dizziness, disequilibrium and vertigo changed much in the last 7 years? NO

So why even try? BECAUSE… Small improvements + action= PURPOSE

I will no longer poo-poo or shy away from recognizing and acknowledging small victories (YES… improvement)!

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

Creative Sunday

Theme: Father’s Day

You didn’t clam up knowing your first child would be a girl
You treated me as precious metal, your beautiful baby pearl
We were close. There were no secrets
Thrifty ice-cream got me to confess your birthday present trinkets (My mom was bummed that I told my dad what his birthday presents were before revealed. All it took was the bribe of an ice-cream cone!)
A man not afraid to work hard
You reminded me our ancestors fought long and hard
Reduced calls out of the hall forced you to reevaluate
You took a job in another state, making sure your family had food on their plate
I was too young to show my gratitude
That didn’t change your patient attitude
Calm and cool was always your approach
You never addressed me with harsh words of reproach
After babe, the second person to believe my symptoms were real
You accepted me for who I am, and I have never had to appeal
Remember when I was waking up in the house at 2pm depressed?
I would cry, telling you how I felt down and oppressed
You would talk me out of those moments of unrest
I am so proud of you that you have given your life to God
I know you will find internal peace when life pulls out the firing squad!
You are now a grandfather, and a new generation of kids adore you
I get to see you interact from a different point-of-view
Thank you for teaching me that each generations goal should be to improve
I believe that previous generations are looking down on you and approve!

*I love you dad! Sorry I can’t participate with you today. I am with you in spirit.

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

Finally Turning On Life’s Joyful Flashlight

These last 7 years of vestibular(balance) chaos has led me into deep, dark, corners. I don’t often get opportunities to relish in joy.

Differing disabilities, one community | Meet disabled people online

 

Yesterday seeing the article that Blake Watson and myself coauthored for Disability Horizons, left me cloaked in joy!  I was beaming yesterday.

 

Disability Horizons - A 21st century view of disability

I want to experience more days like this! I need to experience more days like this. This condition has no problem leading me down a dark path. I realize I will have no problem finding my way out of darkness with the help of life’s joyful flashlight.

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