It is no one’s fault that the sun was shining when I awoke this morning or that I carried a heavy heart within a half hour of rising. Anyone and everyone who knows me remembers that my brother, Al suffered terribly from a disease called MSA, (Multiple System Atrophy).
It is on my mind daily and I am still battling the mourning process. What is mourning process you may ask? It is more than just realizing that someone dear to you has passed on from this world. It is a living process that for me has affected my soul and my physical body.
The mourning can rule your life if you are not careful and there are times that I don’t care if I am careful or not. It is a strong feeling that determines if I eat or not. If I leave my house or not. The smiles that I once wore disappeared; but are slowly returning.
I was Al’s caregiver and sister for seven years. It took a toll on my soul and body in a different way than it did Al’s. He is at peace now while I am struggling through dark days trying to find that brighter light.
When one experiences a very rare disease, you tend to seek out others who are suffering from it also. In this process we go towards the links that bind us together as a family unit; trying to hold onto our faith and hope. We lean on each other through tears and our personal fears of losing our loved ones.
I belonged to several groups on Facebook that dealt with MSA. There were support groups, and even groups for angels of MSA. Throughout these past several months I have come to know many families, caregivers, wives and husbands who had loved ones suffering the same illness as Al.
It was with a huge sigh of sorrow and heavy tears that I learned of one of my very dear friends that her husband passed away from this tragic illness early this morning. I felt like I was reliving Al’s death all over again.
I knew without a doubt some of Carole’s feelings that she must be living right this moment. My heart bleeds and my thoughts are with her today more than ever. It seems that at least one person each week on an average pass away from this world of this disease.
For me, I have been toying around with my writing. While waiting for my book called, Al His Life and MSA, to be finished in the editing department, I write about nothing. I focused so long on him and his health and making sure that he was as happy and content as possible, I now no longer know what to write about. Poetry seems to be a place I find comfort. Poetry allows you to bring your feelings to the table without actually saying your own name.
I will never forget those who have died from MSA, along with my brother. I still continue to read many comments on the MSA sites. I try to help when I am questioned from other members on what they are experiencing.
The above link I placed here for you to read if you wish. It will always hold my interest until they find a cure for what now has none.
Retired Microsoft, NeXT and Oracle Executive Becomes First-Ever Patient Appointed to Multiple System Atrophy Coalition Board
Tom Looney, diagnosed with MSA in 2008, worked closely with tech industry icons, including Steve Jobs. His unique experiences and talents will now be utilized to represent patients and increase awareness for this rare and terminal neurological disorder.
Recently, celebrity chef and famed restaurateur, Kerry Simon, announced his own battle with MSA, in connection with a major MSA fundraiser held in his honor at the Cleveland Clinic’s Lou Ruvo Center for Brain Health in Las Vegas.
It doesn’t stop. The creature MSA continues to attack anyone. There is no eliminating process. I pray and carry faith that one day this will be cured and no one will ever have to suffer like my brother did.
My brother’s last shoes. His last chance at making decisions. These were our hope that he would love much longer than he did.
I admire you Terry!
Not as much as I admire you dear friend. Hugs
Hugs. Even I find comfort in poetry and poetry does helps me to bring out my feelings without saying my own name
It is a fantastic way to write isn’t it Yoshiko. I am glad you can do this also
Indeed fantastic to write poetry when The Lord opens the poetry tap in me 🙂 even I am glad for you able to do so
Thank you sweet friend for all of your lovely comments
Welcome 🙂 just a small gesture
Many hugs Terry, I do really hope they find a relief and cure for this awful disease.
Thanks Ute, I hope they do also find a cure. Are you having a nice weekend?
Terry thank you I do, I had a smashing Saturday (it is evening now) swimming, picnic in the sun, walking and I am all tired out!
Wishing you a good Sunday!
Sounds like a wonderful Saturday!!
good post expressing your knowledge of MSA… I have learned so much from you by reading your blog…
Thank you Marilyn. I hope you will enjoy the book also when it comes out. Hugs and hope you are having a nice weekend
There is no time frame on mourning. My beautiful baby girl died 46 years ago and to this day, something will come along and shove to my knees with tears pouring down my face.
What is import is that I do grieve and get the pain out so the beauty of th emery of her being remains.
This is beautiful, what you said in your comment. I hope that I see things the way you do in time. Thank you Sun. you are the best.
We must keep the faith & hold onto hope for a cure. Hopefully – it will be soon too.
Yes, I agree. We have to have and carry hope. What else is there in this world if we don’t?