Technical website issues required this diary to be first published under the name of KosAbility's senior admin; as a result, comments are at this link.
I had a stroke during brain surgery for an arterial venous malformation (AVM) on February 5, 1992 at the age of 32. I am 55 now. The experience changed my and my family’s life forever is an understatement. "Never Again" is a story about the first year after the stroke. The central lesson I learned is that friends and family are important. It took a stroke for me to get that lesson through my obstinate brain, as my wife likes to point out.
This tale is being published with the help of the kind members and friends at Kos Ability to celebrate the 23 anniversary of my surgery.
What is an AVM? Well, the short answer is provided by the Toronto Brain Vascular Malformation Study Group, University of Toronto:
AVM stands for Arteriovenous Malformation. An AVM is a tangle of abnormal and poorly formed blood vessels (arteries and veins). They have a higher rate of bleeding than normal vessels. AVMs can occur anywhere in the body. Brain AVMs are of special concern because of the damage they cause when they bleed. They are very rare and occur in less than 1% of the general population.
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Never Again
I received a call from my wife, wondering if I would come to Danny's Pizza Shop to look at a refrigerator that wasn't cooling properly. I'm a refrigeration mechanic by trade and Danny is my brother-in-law, so I often swapped pizzas for service calls. I am on disability, so I am not as busy as I once was.
I had a stroke during brain surgery the previous year; in fact it was exactly one year ago to the day, February 5, 1992. But nobody made mention of the anniversary, and I was deeply hurt because of this. I was beginning to see life wasn’t going to be the same; nor was I ever going be to the same, no matter how much I wished it to be. Oh how I wish I could have my complete body and mind back ….
At the rehabilitation hospital, nine months previous, I would push myself to the limit (sometimes beyond the limit). I had to learn how to live again. I had to learn how to dress myself, how to go to the bathroom by myself and wash myself. And shave. And brush my teeth. How to follow simple directions. How to walk. And my greatest challenge, how to speak. I couldn't speak at all. I couldn't communicate. I had to learn how to point to things I wanted. Crying was easy, which was my only way of expression for weeks.
I was scared, I mean, really scared. How could I support my family? Would we lose the house? The car? How would we eat? How long would I be off work? One year? Two? I did not even think, at first, even fathom, not working full time five years or more. Work was important to me--it was my life. I would not listen to anyone when they spoke of how bad I really was. Family and friends could not or would not discuss how bad I was. It was like a bad trip into Peter Pan’s world where everyone was commanded to think "Happy Thoughts." Often when I was in ICU, I could tell my wife and mom had been recently crying when they would come their short visit; I wanted so much for them to cry with me. Denial and stubbornness shielded me from the truth. And from myself.
While in outpatient therapy, I had been walking to increase my stamina in order to return to work, and would often walk the five miles from home to the pizza shop. My stamina was important to return to Bent Tree Country Club as Facilities Manager. I began walking the week of my discharge from the hospital. I would walk to the house next door and back home. The next day, I would walk down two houses. I took a nap to get over the exertion. Two weeks later, I was walking down to the end of my street, and a month later, around the block. I increased my distance up to six and a half miles a day, which would take me three to four hours, but it was progress, nonetheless.
Working hard throughout my rehabilitation period kept my mind off of not being able to return to Bent Tree. Just focus on my exercises; forget work for a moment; lift that right leg; do it again; lift the right leg; keep that foot pointed forward; don’t let the toe drop. You see, I had to think about moving my leg in every position; up, down; up, down; up, down; on and on. That is the point of concentration during those daily five-mile walks. But I was determined. What else could I do?
And I thought that it would be a matter of time before I was offered my job at Bent Tree back, or some job; just a matter of time; I was working hard; I held up my end of the bargain! After all, I’ve had a family depending on me! It wasn't fair! This stroke was just a temporary setback--wasn't it? I have never worked so hard in my life, undergone so much humiliation and been stripped of all my manhood. Bent Tree Country Club would not restore me to my job. I have been placed on PERMANENT SOCIAL SECURITY DISABILITY! No one had even asked me! No one, it seemed, was even talking to me anymore; they did not even want me to look in a mirror. Am I deformed? Am I that bad? Am I dead?
I sometimes wonder in my darker moments.
I became depressed. Who would not? All I ever knew was hard work, and if that fails, take control and work harder. A year had passed since my stroke and I still could not work. This work ethic had failed me and I could not figure out why. This work ethic I had grown up with--been taught all my life. My father held three jobs, as I proudly had--until the day of my stroke. Now, I could not even hold one full time job.
I needed work to know myself. I needed work to define me.
Without work, I am nothing.
"Who are you?"
"I'm Steven J. Park."
"What do you do?"
"Air Conditioning and Heating has been my livelihood.
"How much experience do you have?"
"My dad put me to work in A/C & Heating when I was 11, as a
gopher. You know, 'go-fer' this and 'go-fer' that. I enjoy electrical and mechanical work."
"Where are you employed now?
"I am Facilities Manager at Bent Tree Country Club."
"What do you do?"
"If anything breaks or there is a problem to solve, I'm the one they call. I am qualified to repair air conditioning, heating, electrical, and plumbing. I'm a hero! They can't live without me! They can't replace me!"
They can.
They did.
"Who are you now?"
"I am lost."
Back at the pizza shop, I gathered my tools for the task of working on some decrepit machine. The pizza shop is in an old Dairy Queen, which had long since disappeared. The shopping center where it was located is a relic. Most of the businesses have moved elsewhere or gone under. This pizza shop was one of about a half dozen businesses that were still open; 'For Lease' signs dot the other empty buildings. The parking lot consisted of dusty asphalt pavement, with fresh patches splattered on it in places. Ancient signs on the drug store and rusted parking lot lights, half of which didn't work properly.
The parking lot was abandoned, other than mine and Danny's trucks. The smell of freshly baked pizza filled the air, and that made my stomach grumble. I came in asking what was wrong with the icebox. I was depressed, and it was showing. I was glad to have anything to do, even some icebox to work on. I was feeling bad. It's so important to feel needed, to be of some use, to be told, "You're OK." I needed work.
Time.
It was the third floor of the rehabilitation hospital.
Time.
I've got to get better so I can return to work.
Time.
I awoke with that thought in mind each morning while in rehab.
Time.
Looking to just getting back what was lost, no matter the difficulty.
Time.
Just Concentrate.
Time.
Hope. Focus. Sweat.
Time.
And I did.
Time.
And I saw great progress, remarkable progress.
Time.
And it was just not enough.
Time.
And I was running out of
Time.
...and I felt like a failure.
Sure, I made a lot of progress, but I wasn't working full time. It was now that I realized hard work wasn't allowing me to accomplish my goal. What I thought I wanted was for everything to be just like it was before--before the surgery and stroke. I may as well have wished for the moon.
How do you tell a man that he is no longer capable of work? I thought of suicide, ending all of my misery. But I thought of how much I wanted to live when I first became aware after the surgery, of how much I wanted to live, period. But to live the rest of my life like this? Not working? Not employed? I was eating myself up with this dilemma. Damned if you do. Damned if you don't. I still wasn't back to work. Not even close!
Well, back at the pizza shop as I attached gauges to the sick unit, I looked up to see my father. "What are you doing here?" I asked, not quite understanding what was happening.
I was perplexed. Then, I saw my mother. And friends came into the dinning area from a back storage room. And people from the church. And I suddenly realized they were here for me! All these people were here for me! They started singing "Happy Birthday." It was not my birthday; it was a year since my surgery they were celebrating. I guess you could call it my new birthday. From somewhere a cake then came out. They where there for me. I could not quite believe it! Then my wife, Charlie, came up to me, reached her arms around me and gave me a kiss. That is when I lost it, I started crying. Nobody had forgotten me. A surprise party! And man, was I surprised!
My wife had realized the importance of the date to me, and how depressed I had become. And she knew, somehow, what I had lost; the grieving I was experiencing. Charlie wanted me to know I was surrounded by family and friends who love me--love me for who I am.
I felt a sense of relief that I did not have to carry this burden alone anymore. I did not have to work full time for my family and friends to love me; they realized what I had lost and they were there for me. I had been overlooking their support all along. Charlie loves me--and had never stopped loving me. What a revelation! I was only trying to get by the best way I knew how, by working hard. Stubbornness. Will power. Bullshit. I need people. I need my family. I need my friends.
If I were to die tomorrow, there is not much I would regret. If I died in February 1992, I would have regretted a great deal. Let me explain myself here, for I think this is key to how I have changed. Back before my stroke, I had little time for my family. I was working three jobs and too interested in fishing the rest of the time. No time for my wife. No time for my kids. I thought material stuff was all they wanted.
As soon as I was aware after the surgery, I knew that I had been close to death. I lost something to the stroke, some physical attributes, but I've gained so much more. I can see things clearly now; I had life all backwards. I had always put work first, ahead of family. Ahead of my children. Ahead of my wife. Had I died then, I would have deeply regretted not spending enough time with my wife and kids. I now spend a great deal of time with my family. And I love Charlie and Ashley and Lisa very, very much!
I Never Again want to depend on work in order to be fulfilled, this is what scares me now as I contemplate employment.
I Never Again want to be wrapped up in making as much money as possible, the way I did before the stroke.
I Never Again want to forget my wife and children, they mean everything to me.
I Never Again want to forget that I have a family to fall back on.
I Never Again want to forget my true friends, and be willing to accept their gracious help.
I Never Again want to forget...
Never Again....
Post Script:
I have the gift of writing, although to this day, it is painful and slow.
Real slow. And full of errors! Once I put my thoughts and feelings down on paper, I can manipulate the words over several sessions, so that they make sense to others--and are enjoyable to read. I still find that talent amazing.
Taking advantage of that factoid, I took the class on “Writing for Wellness” during my sophomore year at Richland. I wanted to explore the development of my writing to the possibilities of eventual employment, and write something to enter in the writing contest. I liked the attention the writing contest gives to the entrants. When I wrote a "Difference in Time," I thought I had accomplished the goal of writing something that will win, or place, in the next writing contest. Well, so much for thinking I had it all figured out.
When I finished writing "Never Again", I knew I had something special. When I was told that "Never Again" won 1st place, I remember feeling indifferent to the news. One English professor asked me why reaction was subdued. I told him that I had expected to win, that I felt entitled to win. But, it was not the utter joy and unbelief upon hearing the news that "Break the Silence" had won an “Honorable Mention” at the previous year’s contest. It was a period that I was full of myself with my perceived abilities. Unfortunately, I would not lose that haughtiness until much later. Part of growing, I guess, is to face that ugliness we do not want to acknowledge about ourselves.
Nevertheless, the period I went through writing and shaping "Never Again" was a moment of catharsis and joy for me. And the more I worked on it, the better it became. I brought the feelings of unexpected change in life to understanding of its importance, the wringing of my soul where others can see and experience what I felt. I was able to connect with others on a very deep and emotional level, where only tears have reign. The writing of "Never Again" was exhilarating.
My wife, Charlie, worked at that time for American Heart’s Stroke Connection Magazine at their National Center in Dallas. The Stoke Connection was all set to publish "Break the Silence" when I presented them with "Never Again." Well, the Stoke Connection dropped "Break the Silence" and rushed "Never Again" into print as, “The Awaking” (Winter issue, 1997). Sadly, "Break the Silence" never was published.
Technical website issues required this diary to be first published under the name of KosAbility's senior admin; as a result, comments are at this link.