My Huntington's Disease Poemies

A hearty welcome aboard Scrivener :laughing:

Take care

Thank you for the warm welcome…

You have a lovely style in your poetry. Thanks for sharing!

And by the way… you should write more.

Nice stuff.

After reading some of your poetry I started feeling like I had some class. :slight_smile:

Heater wrote:

Someday I will be whole again
Along with all of you

Maybe sweetheart, you`re already more whole than all the rest of us put together, will ever be.

Take care

I went back and read your personal story and I am humbled and angry.

Angry because when I read of people that picked on you during your time of mourning was a line that should never be crossed even out of jest. One mad pigeon here. The gall of people makes me wanna dive bomb and shat on all of them!

Many people live with the question of “How will I die?” and they take mystery for granted. Not many understand that people that are diagnosed terminal are not awarded with that mysterious question in life instead the question is changed from “How will I die?” to “When will I die”. That knowledge is a very heavy burden to carry. Very hard for family, very hard for love, and very hard for happiness.

About 10 years ago a couple I was very close to had a second child. She was an angel. Baby blue eyes, fiery red hair, and a very very “old soul” disposition. She never cried, never complained, and greeted the world with wonder and awe.

At 18 months they took her in to the doctor because she was still not even attempting to walk. She only rolled over, never crawled, nothing.

The doctor said she was a “lazy baby” and sent them home with the advice to make a point in trying to exercise her and “teach her” to crawl and then walk.

Another 2 months go by and no success so they go to another doctor for a second opinion. Confusion set in real quick when after some extensive tests the doctor asked the strangest question.

He asked the couple “Are you brother and sister?”

The doctor was greeted with shock and anger. Of course they were not brother and sister. It is the deep south but come one! They were not even distantly related. Had no “shared family blood” nothing.

The little girl had a very rare disorder. I do not remember the name but it is closely related to MS. For the luck of chance they BOTH were carriers of this strange gene which to put in perspective is you have better chances of winning the lottery than to find two people that fall in love and get married that both carry the gene unknowing. What was worse was they had a 50% chance to pass this killer gene to any child they bore and another chance that their children would carry the gene although go unaffected.

In this disease what happens is the cells in the spinal cord expire at an exponential rate which depending on what “type” the person has leads first to paralysis of the extremities (legs and arms) and eventually leads to the nervous system dying off slowing with paralysys spreading throughout the body until the lungs and heart lose function and the person dies. They are aware the whole time and suffer no outwards signs, no pain, nothing. Only paralysis. A slow death of their body without effecting their mind at all.

The girl couldn’t walk because she was paralyzed

Some that are diagnosed can make it to the age of 20. A rare few have lived to their 40’s. Most die before they are teenagers.

My little angel was given 6 weeks to 6 max months before complete paralysis would claim her life.

Was there anything anyone could do? No. Since it is so rare very little funding is set aside for this disease. They could try some medicines to maybe “slow” the progress but nothing could be done to stop it or reverse it.

When news of this hit the family the sorrow set in. I remember being over at their house and playing with the little girl. She had the brightest eyes and most innocent smile. I remember the family sitting there crying and wailing and giving “forced” attention to the little girl.

I also remember the accusations towards me. That I was cold hearted because I showed no signs of mourning. That I was a heartless bastard. How could I play with her and make jokes. She was terminal for Christs sake!.

I look each of them in the eye and told them this.

“She is not dead yet. She has a right to live a normal life of a child. Since each of you are being too selfish to grant her that then I will.”

I also told them to look in that little girls eyes and see that old soul. I said Doctors may have given her 6 months, you may have given her six months but like hell I am going to limit her to six months. I made them a promise that if they loved her, and treated her like a normal child then she may surprise them. Hell she may out live them all. I was being cold hearted? I was trying to be selfless and trying to give that girl something other than sorrow and pain. A little fun and happiness, some lame jokes and attempts at humor.

Like how you were selfless in taking care of your mother. You gave her something many people never get no matter how long they live. You gave her peace. You gave her serinity. You gave her unselfish love. Nothing is more powerful than that. Nothing is more rewarding for that person you love than a gift of such magnitude.

I smile a lot now a days. I don’t see the couple nor that family much anymore. They had another kid but this one is only a carrier and not effected. But I do know my little angel is still chasing boys around in her little red electric wheel chair giving them hell! And she can run you down in a heartbeat. She is feisty, she is scrappy, and hell or high water she has fun.

Yup she is still here for now, living past all the expectations of modern medicine and defying all logic. Why? Who knows? Maybe she didn’t bow down to the question of “When will I die?” Maybe she is powered by the question of “How did I live?”