Red Room Where the Writers Are

On July 30th, 2009 a stranger took over the body of Billy-Joe, it started a new saga in a life that has already fought through a lot of adversity.  Billy-Joe has a new wife, son and some animals.  We were offered a home back in Billy-Joe’s hometown.  So with that it was five loads to move up. We did it, then it happened.  July 29th, 2009 Billy-Joe suffered a stroke.  This time with Billy-Joe’s loving wife by her side, her mother, her son, baby-sister.  Her Uncle Larry and Aunt Sharon, Billy-Joe laid in ICU.

All alone in this hospital room, after a nurse had bathed, dressed and administered Billy-Joe’s medications for the night.  All that was going through her mind was the fear, tears that Billy-Joe saw in her families eyes, she tried to tell them it will be alright, due to the stroke her speech was incoherent to them all.  All night Billy-Joe fought with her body, this stranger that took her speech, ability to walk, move, go to the bathroom, bath herself.  When the doctor told her it would be two months before she would leave this hospital. The war was on, she fought back once to walk again and by God she was going to do it again.

All night she fought, argued with her brain to move.  At six the first morning Billy-Joe moved her index finger, to reassure herself, the hourly inquisition from the nurse was due.  The regiment of what’s your name, what day is it, where are you, the flashlight in the eyes where done, she asked the nurse to look at her left hand.  Eureka Billy-Joe you moved your finger, the nurse called in the doctor and other nurses to show the feat that had been attained.  Well when Audrey and Billy-Joe’s mother come in the floor was abuzz with excitement.  Excited Billy-Joe said look what I can do, of course still with the incoherent speech the nurse came in and explained, with that Audrey lifted the blanket of her left side, mom got close to see and there it was the finger moved.  One of many new feats this strange body is going to accomplish.

And she did, two weeks in the hospital Billy-Joe against the advisement of the Doctors and physiotherapists walking with a cane left the hospital.  Then the hard part came.  Billy-Joe could not drive nor take a shower alone.  Her first night home Billy-Joe went straight to bed, the short drive home tired her out.  The next day happy to be home, Billy-Joe wanted to make supper for her family.  Well standing in the kitchen she began to cry.  Her loving wife went to her and asked what is wrong.  Billy-Joe explained she wanted to make Chicken and spaghetti but I can’t remember how I did it.  With a hug and smile Audrey said it’s ok hon it will take time and she started taking out the vegetable, onions, garlic out of the fridge.  Got Billy-Joe’s favorite knife, the pot for the chicken and handed the cutting board to Billy-Joe and said; “here hon you cut the vegetable so good, give it a try.  That first meal took four hours to make but guess what through the tears and the pain Billy-Joe had did what she set out to do.

That night was the first of many falls that would happen because of this strange body that infiltrated Billy-Joe.  She had to use the bathroom, Audrey asked Billy-Joe: “Do you want help?”  “No came the replied, I want to do it on my own.”  Well with a bang and a thud, Audrey came running to the bathroom along with her son.  On the floor sprawled in the litter pan, pants down around her knee’s, Billy-Joe laid helpless crying.  Billy-Joe looked up with tears in her eye’s and asked Audrey: “Can you please find my body, because this stranger is not mine.  With laughter and tears, Audrey got Billy-Joe up, and the relearning has begun.

Over the last two months things are still hard.  Billy-Joe’s body still is not the one she remembers.  A thoughts will form in her mind and she can’t get it out.  The hardest part is anyone that has know Billy-Joe prior to the stroke, does not realize that she is not that person anymore.  Everyday is a struggle for her, from getting out of bed in the morning to forming a logical thought.  Billy-Joe’s wife put it beautifully when one day we were sitting down, having a morning coffee.  Audrey looked and Billy-Joe and said: “Hon I’m sorry, I get so frustrated with you then I realize that it’s not you I am frustrated with, it’s the stroke.  I remember what you were like before I really miss that person.  Then I get mad at myself when I realize that the stroke changed you, you are trying so hard to get better.”  I looked at her and started crying.  “I want to be me, someone took my body and replaced it with someone I don’t know.  My body does not do what I want it to do, trips me when I’m not looking, I want this stranger gone.  I want me back.”

With this conversation out in the open, we both started laughing.  A stroke just does not affect the survivor, we have to give major credit to the partners of the survivor.  We want to be self reliant again.  We want to be the person we were before.  It is a learning experience for the survivor to regain our mobility, thinking, moods.  The family remembers what we were like, it is so frustrating for them.  They get angry, frustrated, frightened that it will happen again.  That we will fall, or forget what we are doing and not know what to do.

If everyone can only get in the mind of a survivor, wear our shoes for two hours, see and feel what we see and feel.  For the survivors that fight to get back to our own life, there is a lot of work.  
We are strangers in our own body.  We remember what we were like before, yet we can not be that person right now.  We can express our pain, frustration, inadequacies.  As the old saying goes unless you walk a mile in someone else’s shoes you don’t know what is going on in there body.  

When people look at us, they may see a cane, wheelchair, or not.  What they see is a person whom may not be able to form a proper sentence.  What about hey why are you looking at me funny?  Why can you not move any faster?

So if you come across a stroke survivor remember, when you asked them a question please give them time to answer you.  Or if they come out with something off the wall, don’t laugh at them, say I don’t understand can you say it again, give them a chance to explain them.

There are so many invisible disabilities that some tend to negate, make fun of.  You know what if you think that a stroke survivor is a stranger, we are.  We are fight to acclaim our life back, our strengths back.  We fight everyday to accomplish a goal for our self.  It is a struggle for us everyday.  We do think of our loved ones, putting up with a stranger amongst them.  Well we are the stranger in our own body.

Each day we make little goals, please be patient, if you are frustrated tell us.  Communication is so vital to a stroke survivor.  We are locked in a stranger’s body, in a world to our self.  To motivate us and give us the strength to fight, when we are tired.  Tell us what is bothering you, you just might find out that the stroke survivor has the same frustration.

When we can figure how to get the stranger out of our body, then we can make it better for everyone else and support other survivors, the care givers can support the new care givers.  Communication is the fundamental ingredient to healing.  Don’t let the survivor go into a silent world where they feel they are alone.  If they sit and not talk, or wonder around the house aimlessly, strike a conversation and get to know the stranger with in.

A stroke survivor has to retrain our brain, our thoughts, to learn all over again.  We know that we have already done this before, but the stranger within has taken over for now.  We need time to exercise this stranger from our body and give it back.  We have a long fight ahead of us.  We get frustrated when we are always told it takes time.  One thing I have learnt is that I have no understanding of time.  We want it now not in time. So the fight goes on with the stranger from within, we hope and pray that our loved ones keep the communications open.  Therefore we shall fight this stranger together.  You never know you may love the stranger more.

This is one interpretation of a stroke survivor that is trying to stay out of a world of isolation, to become the person she was before, you never now maybe with some better strengths. Just remember we are fighting to get ourself back, be patient for us and with us.