We, the patients, caregivers, families, doctors, scientist, volunteers, medical clinics, doctors offices, Neurologist, all need your help.
I KNOW from experience this illness sucks big-time! I know the exhaustion families and caregivers go through while caring and watching their loved ones. I KNOW the fear that creeps into our hearts as we ask so many questions that answers are not there for. The rarity is here. We need help. We need answers. We need funding and we need it NOW.
PLEASE HELP, PLEASE DONATE A FEW DOLLARS, EVEN A STARBUCKS COFFEE’S WORTH.
PLEASE DONATE TODAY IN MY BROTHER’S HONOR AT THE LINK BELOW.
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.
Well my friends, I wanted to let you know that I am not delivering every chapter to my blog as I did before with my other 2, Dahlia and Al His Life & MSA. This time I will pop in a chapter once in a while to hopefully make you want to read more. This new book is going to be geared more towards that book that women will want to pick up and read once they are in bed and under the covers relaxing for the night.
Here is Chapter 18 of my newest book called, JENNY
The next morning Jenny was walking to town to run an errand for her mother. She passed the little cafe and paused as she saw a bright, red poster in the window, HELP WANTED. Jenny thought about what it would be like to earn her own money. She wouldn’t have to wait for her parents to help her; she could help herself.She walked in the door and took the sign out of the window. She looked around and then saw the manager and walked towards him. “ May I help you Miss”? “ Yes, I saw your sign and I would like to work here. Do you still have an opening”? “ Yes, there is one opening left. It is for a waitress. Have you ever had waitress experience”? “ No, but I am a fast learner”, Jenny said with a big smile.
The manager liked her smile and he thought she was pretty too. She would help draw more customers in. He motioned for her to take a seat at the back of the cafe. She followed him and he came along with an application. “ Please fill this out. When you are done, let me know”.
Jenny went to work filling out each question. She double-checked her work, making sure she had left nothing undone. She looked up and caught his eye and he came back and sat down across from her. “ Now this job doesn’t have a lot of hours to offer. A few nights per week and definitely either Friday or Saturday evenings until 9, and of course you will help with the clean-up detail. The job pays 3.00 per hour and you will be able to keep all of your tips”.
Jenny flashed her smile and it melted his heart. The manager thought of his own granddaughter and how both girls looked so much alike. “ I would like to take you up on your offer, um, Mr. um”. “ Ted, just call me Ted” and looking down at the application, he continued, “ Yes, Jenny, we are on first name basis here, so Ted will do”.
The two stood up and shook hands. “ Be here at 4.00pm tomorrow. One of the other girls will show you the ropes”. Jenny thanked him and turned and walked towards the front door feeling giddy. Her very first job. She couldn’t wait to tell her mother and father, and of course John. They would all be so happy for her. She almost skipped all the way home from excitement.
She gave her mother the bag from the errand she had run for her. She grabbed her and swung her around singing. “ Well what in the world girl? What has you so excited? All you did was run one errand for me”.
“Oh mother, the best news. I accepted a job. I am going to be working at the cafe in town. Not too many hours, just enough to give me some of my own spending money. “ But Jenny, what will John think of this? It is so close to your wedding. You are going to be a married woman and he will certainly not want to have a working wife. He will want you to remain home and raise your family”.
Jenny laughed, “ Oh mother, this job will not be forever. As far as John goes, there is no wedding date set. I am sure he will allow me to work until much closer to the day of the wedding. Really, mother, you are living in the old days”.
Jenny’s mother looked at her. She had never quite heard that sort of talk come from her daughter; but she did have a point. “ I guess you could be right. This job would give you some money that could be partly saved for your wedding and your future”. Jenny hugged her mother for understanding and danced off to her room.
She looked at herself in her mirror thinking; tomorrow, tomorrow evening I will be working. She touched her face and then thoughts of how dull her face would look to the customer darted through her mind. She ran back into the kitchen. Calmly sitting down at the table she hesitated for a moment and then asked, “ Mother, do you think you could spare me some money? I really want to be able to purchase some make-up”.
“I thought you and I were going to go to town this coming Saturday and look at selections”. “ But mother, I begin work tomorrow. I really want to look my best”. Mother stuck her hand into her apron pocket and pulled out some cash. She handed it to Jenny. “ You always make your point understood. Here you are, and be careful, don’t get anything to drastic that may send your old parents into shock”. Jenny hugged her mother and took off out the back door.
She walked in the drug store and straight to the make-up counter. She looked around at it all. There was so much of everything. How would she ever be able to make up her mind on what she needed. It was as if the sales lady read her mind and she walked up to Jenny and asked if she could be of help.
“ I am starting a new job tomorrow and I want to look my best; but I am not sure what I need”. “ Well you have definitely come to the right person. I will be happy to help you”.