Write About a Time When You Felt Loved


https://magicinthebackyard.wordpress.com/2016/02/01/hello-february/

I write for Kellie Elmore, and it is a pure joy.

 

Feb. 17th,-Write about a time when you felt loved

 

I have told this story too many times; but here is an opportunity to tell it once again, for Kellie’s prompt.

My brother had Multiple System Atrophy. It is a terrible disease with no cure. His body started out with tremors, then falls, a cane, wheelchair and then bed bound. During this process, he lost his ability to communicate by mouth, or other variations I could think of.

Eventually, he ended up in his bed, unable to move any muscles. The one muscle that he needed the worst, was the heart, and it eventually stopped also.

Al, my brother, had issues. He was mentally challenged and he had always lived at home with our parents. Our father didn’t understand my brother very well, and a lot of times it was easier for the two not to be together too often.

Communication was not very good between the two, and there was love between father and son, but it wasn’t shown near enough. Our mother passed away, and then it was dad and Al.

Then dad passed away, and then it was me and Al. I took care of  him those seven years while we fought together the MSA. Al tended to look at me as some big boss. I hated that because I wanted him to see me as his sister. He saw me as an authority figure, and transferred his ill feelings from his dad to me.

All those seven years, I spoiled him rotten. I did everything in my power to show him I was not dad. I tried over and over proving to him how much I loved him. I never really knew how Al felt about me, and it disturbed me so very much; especially as his death was something we could not avoid coming.

As I said earlier, Al lost all muscle control. We don’t think about what that really involves, so I will add a few things it changed in his life. He couldn’t speak, he couldn’t move his head, arms, legs. He couldn’t blink or squeeze my fingers. There was nothing to signal except the rise and fall of his lungs.

I pretended that he could hear me. I refused to believe he couldn’t. You see, with M.S.A. usually the memory stayed in tact. I was told he probably would never forget who I was to him.

We went for several weeks with me reading to  him, watching TV with him. I knew he couldn’t see the TV, but I was pretty sure he could hear it. I rubbed his hand and told me how much I loved him.

One day as it was nearing a few days before his passing, something major happened in his and my life. Al spoke. It wasn’t fog; it was clear as a bell. He opened his eyes, which I hadn’t seen those baby blues for so long and he looked right at me.

He said, ” Sis, I want to thank you for being my sis. I want you to  know that I know you did everything for me you could. It is time for me to go to heaven. Remember one thing for me. I love you sis, and I will save a spot in heaven for you”.

I am crying as I write this. Those words meant more to  me than probably anything else in this world except the birth of my three children. The burning question that had kept me up for nights upon nights and had stressed over for so long, had been answered. He loved me.

I miss you brother dear. I will see you soon.

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My Brother Dear


There is never a day I don’t think of my brother at least once. This time of year, I think of him more often than not. I can’t help myself, and I am tired of trying to hide my feelings, so I am posting about him today, and I probably will as it gets closer to March 24th, the day he left and went to  heaven , almost 2 years ago.

 

I knew you were ill

My brother dear

Because of this

I made plenty of decisions

That may look stupid

Or silly to others today.

I wanted to show you

Over and over that

Your life was not

A complete loss.

I wanted to share

Everything I could

With you, anything

To make you smile.

I may not be in the

Best situation today.

I may have to

Scrape and get less

But my memories

Of your bright eyes

And that huge smile

Touch my heart

Deeper than anything

In this world.

I don’t regret a thing.

I am so glad I was

Able to share and

Take care of you

Those seven years

While we fought

Together through

M.S.A.

Oh, how my eyes

Can still seep

Tears of sorrorw.

I miss you bud.

I will love you forever.

And you will always

Remain close to my heart.

Written by,

Your sis, Terry Shepherd

02/15/2016

I Have Changed


I can’t remember if I have talked about Al, my brother lately. Oh, who am I kidding; I think and talk about him to whom ever will listen and not turn their face away.

There are several MSA sites on Facebook that I belong to, so MSA is still a huge topic on my mind, even with Al up in heaven.

A friend told me once, that the pain never quite goes away. The hole in the heart closes, but never seals. The thoughts never escape, the  memories will always remain. The most important thing she expressed to me was. a person will never be quite the same.

Of course, there are parts of me that have moved on. I have fallen in love with my camera. When it and I are together, I really do close out everyone and everything in this world .I have branched out in my writing for my blog and I am writing my third book.  Al will be gone two years this March, and after this amount of time, I have never quite bounced back to the person I was.

I do believe good things happened though because of his passing. I drew closer to God, and I don’t allow myself to stray far from him. I am much more aware to the insensitivity in our world. I have more empathy for those suffering and less tolerance for those who think they will live high on the  mountain for ever.

I have learned that getting a bargain, is a bigger deal than having what is hot. If I get lucky to get a brand name, then it is icing on the cake. I have learned I am not taking anything with me when I leave this earth.

I don’t care so much about how a person looks anymore. It is what is in the heart that I see very clear. I can see when people don’t really care about what you say or think. I draw near to those who speak of inner peace and trying to live a Godly life.

I used to laugh at jokes that were under the table. Now when I hear vulgarity, it makes me sick. I don’t have the trust like I used to. I still get hurt pretty bad when people I care about hurt me, perhaps that is where the trust issue comes into play. No, I am no goody two shoes. I just know, that if Jesus stood in my door way, he wouldn’t catch me doing what I maybe used to do.

I hope that somewhere in this world, someone has noticed my change. Some can say I am depressed, some may think I am a snoot, but this is not true. I would love to spend time with more people, but I don’t want to change who I think God wants me to be in order to fit into other people’s lives.

Yes, Alvin’s death was very hard on me, but I have moved forward in many ways, although some may not recognize. It doesn’t really matter. I will continue to pray that God changes negative hearts and opens their eyes to God.  I miss you Al. I hope you are singing high on that mountain.

 

 

Multiple System Atrophy, Together; We Can Do It


I have stated many times in the past few years that my brother died from Multiple System Atrophy. It wasn’t only my brother who passed away. There are many others. I haven’t figured it out exact; but I would say an average of every 1-2 weeks, someone I have chatted with, either a family member, caregiver or friend,  has passed a way.

I am heartbroken each and every time I read of another MSA angel. It brings sadness to my heart, rushing back the loss of Al, my brother. He passed away 3/24/2014. I can’t believe it  has been more than a year and a half; because as of this moment, I can still shed tears quite easily.

The reason for this particular post is to ask you to give up $2.00, or $5.00 or any amount you can give up. Send it to the link below. Help us to find a cure before another loved one is lost.

https://www.multiplesystematrophy.org/fundraising/donation

If you have not heard of MSA, please don’t feel embarrassed. This is why there is not enough funding and this is why there is still no cure. Work is being done daily with fund-raisers, donations. Word is getting out; but we need everyone’s help. Read the link below and tell your friends, family, and co-workers, neighbors; tell everyone and ask them to give up one thing for the week and make a donation to  MSA.

http://www.mayoclinic.org/diseases-conditions/multiple-system-atrophy/basics/definition/con-20027096

The link below is a video I made of my brother. He was once healthy, just like your spouse, child, family member or friend. Now he is gone. I miss him. He has left a large void in my life, that no one or anything has been able to fill. Please watch and make a donation. If you want, make a donation in Alvin Miller’s name.

DEDICATED TO THE HEALING OF MSA AND MY BROTHER AL


DEDICATED TO THE HEALING OF MSA AND MY BROTHER AL

You came into my life

A year after I was here

I never knew the reason

I only knew you did appear.

 

My time of shining ended

The light went straight to you

I never knew the reason

Why I seemed to feel so blue.

 

I ignored you all I could

I didn’t want to play

I never knew the reason

I wanted you to go away.

 

Then years later we met again

And I knew the reason why

Our hearts reconnected

And many days I cried.

 

Now the illness has gone forever

And you have left my sight

I knew the reason why

You needed me for your flight.

 

You were and remain my brother

I will never forget our time

I never knew the reason

But God just timed it right.

Written by,

Terry Shepherd

I miss you dear brother,

9/26/2015

 

Al’s Birthday and My Moving


I have been so busy lately, I  have fallen away from blogging. It is always on my mind, but when I write; I don’t need a hundred things rolling around in my head. I am taking the time to let you know that I will be moving this coming Saturday back to Indiana.

If you have moved, then you know what a chore it can be. Add some gait problems and tremors on top, and it takes even longer. I am  about 85% done packing. It is amazing how pictures no longer hanging on the walls makes a house seem so empty. I say a word, and I can almost hear my own echos.

I think that it will be good for me to be moving Saturday. It will keep my mind distracted because Sunday is Alvin’s birthday. I know if I was sitting at home, I would be sad and in tears. He definitely will follow me in my heart back home and I will not forget his birthday, no way.

I will be back next week some time. The other part of packing I don’t like? Unpacking, I don’t even look forward to it.

Well, going to get off of here and go back to loading more boxes. Talk real soon. Hugs.

mammath cave 3

Multiple System Atrophy


MULTIPLE SYSTEM ATROPHY

It scares you, I know

These feelings that you feel

A churning inside

The turning of a wheel.

 

You were always so good

Treated others so kind

So why does this happen

The key that unwinds.

 

I swear I know not the answer

I pray for a cure

I pull in support

Just like a flashy fishing lure.

 

I ask everyone to help

I speak of this every day

I will spread news everywhere

This terrible disease MSA.

 

I know how you are feeling

You feel so all alone

My brother found those days

When the clouds were all that shone.

 

You are not alone I swear

You are not all by yourself

I am with you heart and spirit

Praying for your health.

Written by,

Terry Shepherd

4/25/2015

 

Holding Hands


I was just discussing with an MSA( Multiple System Atrophy) patient about communication. When we think of that word, we  think of various things. A handshake, a kiss on the nose, the look of the eyes, the smell of a beautiful scent.

What happens when there is an illness that prevents communication? That is what MSA does. Al, my brother died a year ago from this terrible disease. I worked my ass off thinking of new ways to communicate with him as the illness took over his body.

Flash cards, blinking of eyes, a squeeze of a finger. It finally got to the place that all the communication I had experience with, had failed.

What do you do when you get to that point? There is technology out there that with digital ability will enable someone to still use a form of communicating. The issue with this is cost.

For Al and me, we learned over the 7 years of this illness, that the disease in itself is costly. We weren’t in a place that there were thousands of dollars laying in a bank so that we could use this new gadget. I wish there had been.

I did what I knew best, which was use a free form of communicating. When Al could no longer blink an eye, turn his eyes, lift a finger, move any body part, we used the strongest and best device we had left to us, our hands.

You see, even though Al and many others who suffer from this type of disease are frozen in spot, the memory and mind are still in great working order. Can you imagine how frustrating it would be to want to say something but can’t? What if his nose itched? How would  I know?

The last two months of Al’s life, he lay motionless. I cried inside. Once in a while I cried in front of Al, because I am weak. I am a Taurus and maybe it is true what the books say about us. We wear our feelings on our sleeves.

Al would stare straight ahead, but I would see an ever so slight movement from him when I cried. I knew it hurt him to see me hurt; so I tried to keep my bright, smiling face on when I was with him.  I know it is going off track here, but I will never forget  how Al and I had our disagreements. We yelled sometimes, he walked off on me a few times, but when someone is so sick as Al got with MSA, you just let all that slide off of you. Suddenly, you don’t remember any of the bad crap, all you see is pure love.

Well, back to the story I was trying to make a point with. For me, I held Al’s hand. I held it a lot. I was able to tell him I loved him. I could let him know I would not leave him alone. I could let him know I would do anything for him possible.

Our hearts spoke, our souls remained bonded. Al understood everything in that one free communication; holding hands.

yellow 8Photo taken my me.

 

I hate this disease. If you or anyone you know  has MSA, please never hesitate to look me up. I am here to lean on, cry on, scream at, or just listen. You can also visit me at my Facebook page for MSA. There you will find other patients to become friends with. There are beautiful flowers, uplifting quotes, some funny animals to make you smile, and of course, me. I am there to listen while you talk.

 

https://www.facebook.com/MSAfeelingstressed

 

Simple, but Priceless


Warm and humid. Rain each day. A day to stay inside and sort items. I already showed you some photos I found of Al and me when we were younger. I look at those photos and ask myself, where did the time go? Did I really used to be that much smaller?

I have 2 weeks before I move and for this reason I am not busting ___ to get things packed. I box up, take a break, and then go back to it. It has been difficult going through things. A lot of it has been packed up ever since I left Warsaw.

People tell me that certain places, roads, smells and what-have-yous, are part of the memories of loved ones that have passed on to the pearly gates of heaven. I believe this to be true. It can be the most simple, innocent thing, and boom; your heart is breaking all over again.

I found Al’s memorials from his funeral today. I found the guest book that each had signed as they entered the funeral. I discovered a medium-sized box on the shelf in the spare bedroom closet. I hadn’t opened it since I moved here 8 months ago.

I pulled it down and opened it up. My heart pinched as I looked in the box. There was Al’s favorite, small Bel-Aire cars. My heart squeezed a little tighter when I next saw his favorite Indiana hat he wore up until he was bed bound.

I guess my heart just couldn’t take it as I pulled out the next item. I touched it gently. I sat on the floor and cried once again for what I have lost. I was remembering back to the sound it put off. It was Al’s way of communicating before he could move no more body parts. It means nothing to anyone else.

In fact, some may toss it away, or give it away. For me, I will carry it in my presence forever. Maybe I will even be buried with it by my side to show Al I am coming to be with him.

You ask what this simple, non-important thing is? Nothing more than an old bike horn. Yes, this was how Al let me know when ever he needed or wanted something. What I wouldn’t give to see him squeeze it just one more time.

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Pictures of Al and Me


Every time I have moved, I once again go through the clutter. This time I got serious. If I hadn’t seen or used it since I have been here, it is gone. It actually makes me feel like I am doing that deep cleaning thing.

Going through papers I found some photos of Al and I. Some are of him and me when we were young. One I remember me as a teen. Here they are.

Top Left, Al and me, Top Right, me, Next left, him and me, next right, him,

Next left, him, me, and sister, next right, me in little green dress, Al in red striped shirt,

Next left, Al and his birthday cake, next right, him and me, next left, me and my granddad, next right, Al and little sister, next left, Al and his fish, next right, him and me at Deer Forest.

Hope you enjoy going back in time with Al and me, since you have followed my blog for so long.

Alvin, littleAl little 2