Life With Stroke! A Survivor’s Story

            Years ago in December of 1990,  I was the victim of what was termed a “stroke.”  Later diagnosis indicated that I had suffered a massive “brainstem hemorraghic” stroke. This happens when communication between the brain and body has been interrupted, most likely by an aneurism or blockage in an artery.  In literature from the Stroke Network site on the Internet, it is listed as “a condition resulting from interruption of motor pathways in the ventral pons, usually by infarction.” Fancy words for saying that someone has suffered a stroke and the brain and body are not in-sync with each other.  My stroke was brought about by a rupture or weakness in a blood vessel that caused blood to spill out in the area of my brainstem and caused cellular damage.  Following my stroke, I had several CAT-scans and MRI’s, but nothing showed up on these fancy x-rays until about four months after the actual event or accident.

As best I can remember,  I had no prior warnings except some dizziness and nausea for which my doctor treated as a sinus infect.  There were no signs of the impending medical danger. Near eleven o’clock I did feel a cold shiver run throughout my body.  It started at the tip of my head and traveled all the way to the tip of my toes.  It was like an electrical shock.  I retired early because of extreme fatigue.  I was a teacher at a college and we had just started a new semester, so I figured that was the mitigating factor of my being tired.  About three o’clock in the morning, I awoke very nauseated.  I went to the restroom, but really got no relief.  I leaned to tell my wife of my feelings, but could only stammer to say,” I can’t move.”  At that point, I collapsed onto the floor.  Little did I know the severity of what was happening in my skull?

I remember lying on the floor and being able to see and hear everything that was going on.  Why were my wife and children acting so upset?  And why were these strangers in my house shinning lights in my eyes and sticking stuff in me?  Also, why the devil could I see and hear, but not move or speak. The answer to these questions would be answered, but not before I spent about two and a half months in a coma.  I should, by all accounts, never woke up, but I am stubborn, so I faced whatever it was that had knocked me down so hard and left me functioning only partially.

            Here are some of the facts that I have learned.  The spinal cord of course runs up and down the back, or spine.  In a little area at the base of the brain, there are many little nerves and fibers that attach to the spinal cord and anchor it a place in brain called the cerebellum.  The cerebellum is also connected to nerves that are connected with facial expressions.  That is why stroke can cause a person to droop on one side of the face after a stroke.  Also the cerebellum is associated with movements that utilize hand-to-eye coordination, plus controls much of the movement and balance related activities.  This is the reason for such un-coordinated movement following a stroke.  As I retained a sense of consciousness for a while, I could see, but was totally unable to move or respond to anyone or anything.  This is referred to as “locked-in syndrome”.  Many stroke victims are wrongly diagnosed because of this high state of confusion and inability to respond orally.  Because of my brainstem stroke, I had become completely paralyzed.  Communication between my cerebellum and body had been interrupted, so I was subject to whatever ravages this stroke was causing.

Following the drugs and natural fogginess of a coma, I awoke to a state that was very foreign to me.  I have always been the “A” type person, always on the go, boundless energy and all.  But now, I lay in bed and waited for someone to lift me.  I had a tough time dealing with the aftermath of a stroke.  There were times I felt very angry with everyone and everything.  Other times, I was swallowed up in a pool of self-pity.  Why me?  I had to grieve the loss of body parts that used to respond well.  Now, some of my appendages just hang lifeless and uncontrollable.

This was very hard for me to understand, because I was a gifted athlete.  Coordination was my middle name, but now, tying my shoes was an impossible feat.  Everything I knew had to be remapped to fit into my one-arm and hand world.  Simple little feats became hard and arduous.  Feelings of useless crept into every cell of my being.  It became very apparent to me that my life was forever changed.  All of this had happened and I did not have control.

My experiences in a rehabilitation center at Pitt Memorial Hospital in Greenville, North Carolina are varied, exciting, and disappointing to say the least.  Varied, because they have taught and demonstrated to me, so many, many things necessary to survive in society. Exciting, because I have faced so many new situations and met such wonderful people.  Disappointing, because of the personal goals I had and was unable to regain some of the paralyzed features they have so vigorously worked with me on.  The entire staff of the rehab center did everything possible to help me, but in some cases, I was not up to the task.  They were very professional and compassionate in their treatment. 

There have been years of therapy, doctor’s care, and study of similar brain accidents.  The more I learn, the luckier I feel.  People do not usually survive a severe brainstem stroke.  I did survive, “duh”, being able to write this is my proof.  My left side is pretty useless, but I do have some shoulder movement, and limited arm movement.  My voice is now very different and monotone, but at least I communicate.  I can walk fine now, but I do have a pronounced limp on my left side.  Also, rest has become very necessary during any physical exertion.  I am typing this now with one finger pecking, so I might make some flubs.  I am able to drive my car now and I like to get out explore.  That is one thing that helps me deal with day-to-day problems.  My computer has become a very dear friend.  Through use and manipulation of software, I can design houses, buildings, and other projects.  I can stay informed by reading a great deal of information on the Internet.  I can stay in touch with family and friends electronically with email.  When designing a house or something, I can be very competitive because of my computer.  It does not care about my disabilities just as long as I keep pressing the right keys.  My computer has become my left arm.

People can be wonderful and supportive following a stroke.  Perhaps the fact that I have slowed my actions a great deal, I now have the time to realize their good intentions and motifs.  I have been through an emotional roller coaster, but have withstood it all and made some really good friends.  I still have a great deal of drive and determination, and that has helped me return to the point in my life of  pseudo-independence and happiness.  I used the term “pseudo-independence” because I will always need people and their help.  I do not proclaim that I am happy because of stroke, however, I do proclaim that I have become a much better person.  It all seems a blur, but much like some one picked me out of a crowd of humanity and said ”tag-you’re it”.  Sure, it is terribly unfair!  Others have faced such adversity and emerged from the far side better off.  The National Stroke Association,  refers to stroke as a “brain attack”.  Indeed that is a gross understatement.  A stroke attacks you like nothing else.  If you are lucky as I have been, you can survive and live an almost normal life.   

One tends to concentrate upon those activities that fit into a range of “do-able” and stay away from those that will certainly lead to frustration and high physical demand.  Please learn the warning signs of a stroke, and tell you family members and friends about the signs.  You, be sure to remove any dangerous health anomalies that might tend to enhance stroke risk.  As in the childhood game, “Hide and go Seek”, you have the chance to scramble to home base, a healthier lifestyle, but if you are not careful…you’re playing with your life.

Remember, today is the tomorrow I worried about yesterday.  Make each moment count.