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.
Photo 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
Who I am 