Oh the Valleys we Travel Through on our way to Heaven

It seems so right that I changed the name of my blog page to Who Am I, months ago. Why? Because anymore, I don’t really know who I am.

I know I am a child of God, but here on earth, I just don’t know. I know I am a mom to three and a grandma to several, but some days, I don’t feel like a good mom. I have one child who pretty much has disowned me, it seems. I have begged, pleaded, called and text but no answers are provided for me on what I may have done.

This has turned my health upside down. My blood pressure is now messed up going higher than lower. I am stressed with sadness that keeps my veil of happiness covered by blackness.

I have apologized, sat for hours wondering what I may have said or done without realizing it may hurt others. I am getting sick and I find myself wishing I was at the end of my journey here on earth.

I snap out of that thought though because I am not really ready to die yet. I even called my primary and neurologist and have spoken to both about this up and down blood pressure problem I am having.

I know that my diagnosis has been changed from Parkinson’s to probable MSA. This sickens me. Not so much because it will shorten my life; but because I won’t be as lucky as my brother was in having a sister to take care of him. I will go through this alone with God beside me; which means I am truly not alone.

Life has not been a bowl of cherries as of the past few weeks and I am grateful that Spring as officially arrived and I can get lost in my camera once again outdoors.

Oh the valleys we travel through on our way to heaven.

Memories for all time

I made your photo my cover
There really could be no other

It never fails to amaze me
That your photo drives me crazy.

It’s been five years this March
When you went to the golden arch.

I know you are a happy guy
I don’t even question why.

For God so loved you so
He saw your pain that glowed.

He raised you and stood you up
You drank from his healing cup.

I hope you understand
That I’m still living on this land.

My heart still aches for you so much
I wish I could reach your hand and touch.

You’d say nothing to me I remember
You started this one September.

Multiple System Atrophy
Brought nothing buy agony.

You suffered more than any I know
You deserved your time to go.

I’ll always love you my brother dear
In my heart I keep you very near.

Til the time comes and it’s my turn
Your memories in my heart will burn.

I miss you dear brother Al.
You will be gone five years, March 24th, 2019.
Love you so much,
Your sister, Terry Shepherd

 

January is Gone

t’s been a rough month

Words spearing my brain

I’m actually glad this month’s over

Now dreaming of rain and Spring.

 

Spring is all about new

New hope and answered prayers

I know God listens to my words

Because he is everywhere.

 

On the other side of the coin

Sadness can fill my eyes

It’s so close to my brother’s passing

When I was forced to say my goodbyes.

 

From this day forward

Alvin will occupy my mind

Still seems like only yesterday

He and I had so much time.

 

Our days are filled with goodness

Our nights can be like hell

I just have to remember to be thankful

While God teaches me to sit a spell.

 

It’s hard to not be guessing

What tomorrow may or may not bring

Will we still be like this morning?

Can time really change everything?

 

My faith is what I carry

In a bucket wrapped in my heart

I have to remember to refill it

Until this earth I depart.

 

Written by,

Terry Shepherd

 

Dedicated to life and my brother, Alvin Miller.

The Visit

THE VISIT

 

I can’t get it out of my mind. I keep thinking about the dream I had last night.

 

With the illness I have; I usually have terrible nightmares, always waking up before I die, but to see my brother in my dream and be able to talk to him was bigger than anything I have experienced.

 

I am a thinker by nature so it is not unusual for me to have been pondering on how I made this dream happen. Can I make it happen again?

 

Alvin was healed. He was standing tall. He wasn’t crying and he didn’t act afraid of life. He smiled that big, familiar smile I always saw.

 

We talked. In my dream it didn’t seem like we chatted for a very lengthy period, before I woke up, but I remembered it and i still remember it.

 

I have definitely moved on since his passing. I have managed to hide my tears and sadness. I have laughed among friends. This is the part that has moved on.

 

There is an injured snail crawling inside my spirit though. The feelers come out when I am all alone and this is when it seems like only yesterday; I walked into his bedroom and found he had passed.

 

The dagger still punctures my soul and heart. The eyes well up instantly. I sit. I remember. I cry. I don’t think we ever truly get over the death of a loved one.

 

I don’t know if we ever heal completely. It is complete though. He was born. He lived. He passed. I think there is a bigger torture when there is no final stage of life.

 

When friends or family hurt us and it is never settled. That sword just keeps twisting and stabbing. The mind rolls over big hills and stumbles over boulders as we try to find peace that is now broken.

 

How do we go forward? How do we hide the memories of what once made us smile. How do we hide the tears in our daily living?

 

It is so difficult but this is something each of us has to deal with and lay to rest. God placed us here to send the message out to others about his love.

 

God gave us feelings so we can love and hurt and hug and smile and heal. God gave us ears so we can listen to his message, a body who can accept a hug from another person.

 

We must give these heavy burdens to God. We need to carry our faith in large baskets, and know that whatever the problem; God will carry us through it. We have to believe this.

 

Other wise, we will be injured creatures, walking this earth, thinking only of our pain. We will not be able to reach out to others who need us or are hurting.

 

This dream that I was honored to be a part of was a wonderful vision. A gift from God you might say. I have told God so many times how my life will never be the same, how much I miss my brother.

 

God showed me last night, in my dream, that no matter what pain I am going through in my waking hours, he is right there, holding my hand, guiding me and showing me his love.

 

Thank-you God, for allowing the visit to happen between me and my brother.

 

Written by,

Terry Shepherd

October, 15, 2018

https://youtu.be/8H9T7427EbI

A Conversation about Multiple System Atrophy

“I can’t do this anymore!”

“Do what?” the mind asked.

“This bouncing back and forth. Keeping my faith. Thinking everything is going to be alright. It’s just too much!”

” I understand what you are saying. I play this game every day, sometimes several times per day. It just gets old. I look down at my body. I see the crepe skin, the bags under my eyes. I see the smile try to widen and the reflection of tears welling in my eyes. I see my swollen legs and feet. I feel the sick feeling in my gut.”

The two sit in silence digesting each other’s words. Shame and guilt over the battle of the thoughts. Realizing there is not a damn thing that can be done. No cures have been found and it doesn’t seem enough people really are aware of the  need.

Thinking back to the days of bright sunshine. “Remember when we used to walk down to the playground and sit in one of the black, leather seats hooked up to a metal  chain? We pushed with our legs. “Remember when we had stronger legs?” Silence.

We felt the breeze brushing our hair and the feeling of freedom and joy. Wow, those were awesome times! “What happened? I don’t get it! It wasn’t supposed to end up like this, for heaven’s sake!”

“Today, our legs swing, but not the way we like. They swing when someone tries to sit me  up on the edge of the bed. They swing and feel like a wet rag when they believe I need to get up and take a real bath.”

“Why don’t people just leave us alone? Can’t they see we are humiliated by them having to witness what our bodies can’t do any longer? Damn it! Just leave us alone. We just want to be left alone and die with some dignity!”

“They love us dummy. That’s why they do the things they do. They don’t understand how we feel just by looking at our faces. They have to read our eyes! How can they feel our pain when we can no longer say a word?” Silence

Letting out a deep sigh, the other follows the lead. “This sucks, you know. We are no longer someone they can count on. They are being forced to ponder on what their life will be like once we are buried and out of sight.

“Yeah, you are right. We ought to feel more compassion for them. We promised them the world and forever, and we are now giving them a view of less time.”

“I agree. Let’s give them a break. Let’s try real hard not to show the pain we are in. Let’s try to show appreciation in any way we can, that they are still sticking beside us, taking care of us. I wonder why they do that? They could just take off and find another life.”

“Dummy, they stick around and do what they do for one reason.”

“What’s that?”

“They love us.”

Written by,

Terry Shepherd

06/26/2018

 

Could You Help Me?

https://www.facebook.com/donate/566976957002931/?fundraiser_source=external_url

 

My birthday is coming up on this Saturday, April 21. I don’t know how many of you followed me while I cared for my brother who died from a rare neurological disease, called Multiple System Atrophy.

I had been a caregiver for many years and never, ever saw a disease so ugly and demanding as this and I am not just saying this because my brother suffered from it. It took everything from him and almost claimed his vision. It left him a vegetable in a shell and was a very painful death.

For my birthday, I am asking you to donate a $1-any amount to help find a cure. I swear to you, you don’t want any of your family members to get this.

 

Multiple system atrophy (MSA), also known as Shy–Drager syndrome, is a rare neurodegenerative disorder characterized by tremors, slow movement, muscle rigidity, and postural instability (collectively known as parkinsonism) due to dysfunction of the autonomic nervous system, and ataxia.

The Truth Was Known

Four years ago at this time, I was not sleeping

I was tired and weeping

My brother in pain

Nothing to gain

Unless you were God.

 

 

Tired of fighting but not willing to give up

Multiple System Atrophy was winning

Take me! Take me! I thought

As I sat there watching him breathe

But God knew.

 

 

His heart and mine touched each other

He couldn’t speak but we both knew

His time here as my brother was ending

He didn’t cry, so I did it for him

And God knew.

 

 

In five days you will leave me

You will find peace and I shall be torn

You will stand tall and walk

I will be planning your funeral

God has his plan.

 

 

I make sure you understand I love you

On the 24th, I will release purple balloons

I will celebrate your release from the pain

But dear brother, my void still exists

God knows my pain.

 

Written by,

Terry Shepherd

03/19/2018

 

If you would like to let a purple balloon off on March 24th, in honor of my brother’s release from Multiple System Atrophy, please share a photo of you doing so. Thank-you

Daily Prompt/ One Word Prompt

https://dailypost.wordpress.com/prompts/incubate/

The word for today is; Incubate

verb

1. (of a bird) sit on (eggs) in order to keep them warm and bring them to hatching

Can I exchange a bird and an egg for a person and a life? I consider what I did, in a way, incubating.

My mother passed away quite suddenly. She was a God-fearing, loving and kind woman. She helped open a Women’s shelter here in Warsaw. She and my dad used their own funds and bought an old camper. They gutted it and installed everything needed to make funnel cakes. They traveled to the small-town fairs and sold these goodies and donated all the funds, including the monies to purchase ingredients, to the Beaman Home. She helped people and never let on she was helping them.

https://www.thebeamanhome.com/

She never smoked. I heard her swear once and it was only the word, shit. At the age of sixty-two, she had a sudden Anneurysm.

https://www.webmd.com/brain/brain-aneurysm#1

None of us could help her. She passed away.

I also took care of my dad who had Multiple Myeloma and Leukemia with a little bit of Parkinson’s mixed in.

https://www.mayoclinic.org/diseases-conditions/multiple-myeloma/symptoms-causes/syc-20353378

https://www.mayoclinic.org/diseases-conditions/leukemia/symptoms-causes/syc-20374373

His illness lasted about one year and then he passed. I did all I could, but God wanted him worse.

Then there was my brother. A mentally challenged man who had one heart attack and then Multiple System Atrophy hit him big.

Multiple system atrophy (MSA), also known as Shy–Drager syndrome, is a rare neurodegenerative disorder characterized by tremors, slow movement, muscle rigidity, and postural instability (collectively known as parkinsonism) due to dysfunction of the autonomic nervous system, and ataxia.

(It is kind of creepy and a little scary for me to read back that definition of MSA. I too, have a neurological disease. My doctor can’t decide if I have my brother’s illness or not. He says in time he will be able to tell. My diagnosis is; Parkinsonism/Dystonia/Ataxia. You can probably understand my fear.)

When my brother had this terrible illness and on top of all the other stuff he had went through, I decided to incubate any time we had left, which ended up being seven years, the general amount of life time on this particular illness.

I paid close attention, more than my dad I think, to every feeling, need and want he wanted. I spoiled him rotten. I made sure he had the best doctors we could find and afford. I fed him healthy foods. I told him many times how important he was to me and how much I loved having him for a brother.

I was drained and tired and physically in not the best shape when he passed; but I wouldn’t trade a moment. I have beautiful memories of his and my time together. I shed tears still, but not as often. He will be gone from my vision four years, March 24th, 2018. I feel like I incubated and watched over his days and nights until he was ready to be born into God’s hands.

March is Awareness month, and I am still  praying for a cure. Purple is the color that represents Multiple System Atrophy. The guy on the scooter with the big smile? My brother. The banner at the bottom is where you can call if you are in crisis.

 

Ever Wonder Who I Am Looks Like?

Here I am. I am the writer and photographer behind this blog. I live in Warsaw, Indiana. I have three grown children and I think, 11 grandchildren. I was a caregiver and traveled throughout Indiana for many years and then became a private caregiver for elderly and Hospice patients.

Now I have Parkinsonism/Dystonia/Ataxia. I live in a retired community building and spend my time painting, or being the photographer for the social events here. Yesterday, I was nominated for Secretary for the next year. In April I will learn whether I was voted in or not. I really don’t mind if I lose or win; I was thought of.

I am pretty quiet, but at times I can be a real chatterbox. I love to take my scooter or car and go to the lake and take photos. I love campfires, seeing the smiles on my family’s faces and making memories.

I am an Advocate for a rare illness called; Multiple System Atrophy. I have a Facebook page called Multiple System Atrophy through a caregiver’s eyes, where families, patients and caregivers can view postings that hopefully bring a smile. You may chat with me about questions you have about this rare illness.

https://www.facebook.com/MSAfeelingstressed/

I have published two books and am writing a third. The first book is called Dahlia. It is an uplifting story about never giving up. The second book is a general based book on Multiple System Atrophy. These two books can be purchased through Amazon or Kindle. The third book I am writing is in no holding back the truth about Multiple System Atrophy. Many readers let me know they wanted to know more. I had held back because it is such a horrifying disease; but in this third book, I will be spilling my guts. I think the name of it will be, A Hell of a Disease. We shall see if that sticks.

Well, that about does it. If you have questions about who I am, talk to me.

Suppose, Imagine, Pretend, Tell, Despair/MSA

MARCH IS MULTIPLE SYSTEM AWARE MONTH

GO TO MSA.ORG   LEARN, GIVE, HELP FIND A CURE

DEDICATED TO MY BROTHER WHO DIED FROM THIS TERRIBLE ILLNESS FOUR YEARS AGO THIS MONTH.

 

SUPPOSE, IMAGINE, PRETEND, TELL, DESPAIR

Suppose one day

Things don’t feel right

Tremors or falls

But able to function.

 

 

Imagine going to the doctor

Expecting to hear familiar words

When nothing makes sense

You are condemned to death.

 

 

Pretend nothing is happening

Keep all to yourself

But daily chores

Are becoming a burden.

 

 

Tell all who love you

No one understands

They see you acting weird

They fade from your day.

 

 

Despair  surrounds you

You feel like giving up

You pray for a cure

You scream to the world.

WRITTEN BY,

TERRY SHEPHERD

 

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