She was twelve years old when it happened, the unthinkable, she was suddenly struck blind. It was so horrible; she could hardly utter the words..."I'm blind."
Her mother tried to right the situation the only way she could think of: she sued the doctor. When the lawsuit was over, her daughter was still blind; but at least she was rich.
Things went very wrong for this young woman when her parents took matters into their hands and attempted to "protect" her from herself. The greed of some and the misguided good intentions of others culminated into a miscarriage of justice for this young woman that has stolen the best years of her life.
This is the account of what happened to Ms. Stewart and her family when a guardianship was allowed to run amuck, trying to destroy the very person it was supposed to protect.
Among other issues, in this story Ms. Stewart tells how she and her family finally managed to climb out from under a broken legal system and what they had to go through in order to achieve their escape.
|Product dimensions:||6.00(w) x 9.00(h) x 0.35(d)|
|Age Range:||1 - 17 Years|
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"He Works All Things Together ..."
By Rebecca Strom-Stewart
AuthorHouseCopyright © 2013 Rebecca Strom-Stewart
All rights reserved.
I was raised in a lower middle class family. My parents, my mother and stepfather, both worked really hard to support my three little sisters and me and give us the upbringing they felt we deserved. My dad worked for the grain elevator loading box cars with grain brought into town by the local farmers. My mom cleaned houses for several people in town, both married couples and bachelors.
I remember when we were very small my mom would take my three little sisters and me to work with her and when I got older we became latchkey kids. It was a very small town and definitely safe enough to do things like that. I remember how loved I felt back then. We all worked hard but we all knew our parents loved us and would gladly die for us if they had the chance.
It was the Hi-Line, a group of small towns existing along U.S. Hi-Way 2 in north-central Montana. It was basically a small town American farming community. It was a very safe place to raise children.
We lived in Hingham. My younger sisters and I attended Blue Sky School in Rudyard, a small town a few miles west of us.
I had always been called "bright" by my teachers and didn't have to make any effort to get excellent grades in school. I was active in girl scouts, drill team, girls' basketball and I also babysat for several families in our small community. I was an avid reader and my heart's desire was to be a teacher when I grew up and teach other children to love learning as I did.
This world I have just described was to come crashing down around my family and me in a nightmarish fashion. Our family has never fully recovered from what happened to us. This story is about what happened from my point of view.
I was in the fourth grade when I began experiencing headaches. I continued having these headaches for over two years. Frequently I would awaken with them during the night. Often I would wake up with them in the morning and sometimes they would come on later in the day. They always started small but grew in intensity until they felt like a huge bass drum was throbbing in my head. I would develop a horrible stomachache that would eventually result in violent vomiting. I always dreaded the inevitable point at which I would vomit but it would ease my stomach pain and my headache a bit so it was a real catch 22.
I remember laying there in bed as a child wondering if God was going to make me spend the rest of my life like this. I wondered what I had done to anger Him enough to deserve this. I would learn much later that I had been dying at that time from something hidden in my brain.
For years afterward I struggled to understand how my brain could betray me like that, that's just what it felt like, like a betrayal from within.
It was so hard, who could you blame? God? Tried that, but I knew He loved me. My mom? Tried that too but it didn't feel right either, she was so destroyed by what had happened. She ultimately blamed the doctor.
I remember at night when I would wake up with one of my headaches and stumble to the bathroom to vomit. Often I would collapse on the cold floor next to the toilet from exhaustion when I was done and lay there shivering with chills until I either passed out or regained my strength enough to find my way back to my bedroom. When I would awaken in the morning with one of these headaches, I could only lie there, dreading what I knew was coming. When I had them during the day at school I often felt like a freak, no one else I knew was going through this turmoil.
I also remember having headaches while I was in Minnesota visiting my dad and his family during the summers. I remember at least one occasion when I didn't make it to the bathroom to vomit and I accidentally got sick on my stepmother's floor. She became so angry at me. She screamed at me like a crazy lady. This treatment really frightened me; I was not accustomed to being screamed at when I was so ill.
Each time my stepmother would take us swimming at Big Lake I would experience one of my headaches.
These episodes became so frequent that they almost seemed like a "normal" part of life. I continued experiencing these episodes until April of my sixth grade year. That was when I experienced the final headache and my mom took me to see the doctor who had been "treating" me for migraines for almost the entire time. I don't remember what happened after I fell asleep on the couch in the office at school waiting for my mom to come get me so the following information is based on what I was told by my family members after the fact.
My mom took me to Chester to see Dr. Andrews. When we arrived, after examining me, he and/or a colleague decided to call an ambulance to come get me and take me to the hospital in Great Falls. The doctor instructed the ambulance crew that it was just a routine run, "Just take her to Great Falls and get her looked at to make sure she is alright." (No big deal). My mother rode in the ambulance with me. My stepfather followed in the old blue station wagon. My mother instructed the ambulance crew to go to the Deaconess Hospital when we arrived there. As we entered Great Falls I went into arrest. When my dad saw the ambulance's lights and sirens come on he was relieved my mom was in the ambulance with me because he knew she would have been going nuts in the car with him.
Once we arrived at the hospital they began to try to figure out what was wrong with me. This is how it all began.
The Dark Years
When I awoke from my coma, as the following days turned into weeks, I slowly began to become more aware of what was going on in my environment. I learned that I had lapsed into a coma following the removal of a benign brain tumor that was the size of a lemon. It had been resting on my optic nerve and growing larger presumably since I was born. I had remained in that deep comatose state for two and a half weeks following the procedure.
I was in a special bed that turned me regularly to prevent bed sores while I was in my coma. My mom later told me it was a very expensive bed at the time. Clearly, the hospital spared no expense in making sure I had the best care available.
My days consisted of intensive therapy at the hands of the hospital staff who were diligently working to get my body back into functioning order.
I found out that I had suffered some fairly traumatic physical and mental damage.
I didn't fully comprehend at that point the extent of the damage or the full impact it would have on my future. At that point I thought the blindness was the worst of it. Boy, was I wrong!
While in the hospital I underwent intensive physical and occupational therapy to help me regain the function of the left side of my body because I had suffered paralysis and I was also weak from the time spent sleeping off my coma. That paralysis still affects me all these years later. It has been twenty-four years since I experienced it but I still walk with a limp in my left leg and I experience a slight tremor in my left hand on days when I am tired or not feeling well.
I vaguely remember outings away from the hospital in my wheelchair.
I also remember stories that were told to me by my family and friends about things that happened during that period of time. I think my favorite story is the one my mom told me about how they watched for signs of life in me for so long while I was comatose. One day they saw me reach up onto my face, fumble around, searching for my nose. When I found it, I scratched it. This was the first sign of life in me since the surgery and they cheered.
That year for mother's day the gift my mother received was that the hospital staff shut off my life support machines. This was a gift because it was at that point she finally knew whether I would survive or not.
Other stories that I remember were told to me by my best friend, Dawn. She told me that she had read to me out of my favorite mystery series while I was sleeping. She knew I loved to read. My mom also told me a story about the Shriners coming to my hospital room to visit me (my grandma knew a bunch of them.) My mom told me that they had tied a helium filled, foil balloon to my bed. She said they knew I was aware something was there because I would attempt to strike at the balloon with my hand. My friend also told me about doing the limbo while pushing me in my wheelchair at the hospital. It warms my heart even so many years later to think about the smiles my family and friends were able to enjoy during such a trying time.
I was also put through very intensive speech therapy, not because of speech problems but to aid my brain in beginning to function properly again because of the cognitive problems I was experiencing. I suffered horrible difficulties with cognitive functions because of the damage resulting from the pressure of the tumor on my brain.
Becky H., my speech therapist (who we affectionately called "Big Becky" so that there wouldn't be any confusion) administered aggressive therapy to assist my brain in starting to function properly again.
I participated in these therapies for the term of my stay in the hospital and even after I was eventually released my mother would transport me from our home in north central Montana back to Great Falls for continuing treatments several times a week.
I also received counseling from a doctor in an effort to assist me in dealing with the recent, devastating changes in my life. At that point I was so focused on the blindness and the fact that I no longer had any hope of fulfilling my dreams that I experienced little benefit from these sessions. What could he say to make things better? He couldn't change the blindness.
He eventually told my parents he no longer felt that he could benefit me and at that point he was correct.
For a long time I felt like I was having trouble breathing, it felt like a huge weight was resting on my chest. That is how bad my grief was. I cried myself to sleep every night, begging God to just kill me while I slept, I didn't want to live in this broken, useless body anymore.
I had to come to terms with my new reality on my own. It took a long time and much heartache before I could live without the suffocating grief that surrounded me each day.
I also remained on several medications when I returned home. One of them was Lithium. They put me on this in an effort to control my depression and mood swings. This was a bad decision. I was not depressed because of a chemical imbalance in my brain. I was depressed due to the situation I found myself in. I was very discouraged and unhappy with the turn my life had taken. I remember when I was on Lithium I still felt deep sorrow and grief but it was so much worse because I had to keep the feelings bottled up inside, I couldn't express them. I think a better way to help someone in this situation would be to teach them how to communicate their feelings, not to cover them up with drugs.
As a result of being on the wrong medication, after being on it for a while, I began to have suicidal thoughts. When I started to experience these thoughts I decided to stockpile my Lithium, planning on overdosing on it when I had several pills at once. After I had been off the drug for a while I stopped having those dangerous thoughts so I simply flushed them down the toilet.
During this time my mom had been taking me back to Great Falls frequently for exams and there was always a blood test so they could check several things, one of which was my Lithium level. Realizing that I couldn't hide it any longer I confessed to my mom. She called the doctor right away and told him that I had been off my medication for a while. He said that since I had been doing fine without it not to worry.
The doctors also had me on anti-seizure medication. This was to prevent seizures because I had experienced them when they had relieved the pressure from my brain.
They had also given me steroids while I was in the hospital to make my body stronger to help me survive what was happening to me. To this day, all these years later, I still suffer the effects of those steroids; growing hair in places it is not normal for a woman to have hair. I also develop muscle tone on my arms and legs with very little effort. My first child was abnormally large, he was the second largest child ever born here at the hospital. I can't help but wonder how much of this can be attributed to those steroids. My second child was also larger than average.
Another reason for continued tracking of the condition of my blood was my white blood cell count. After everything that happened, whether it was from a particular medication or something else, my white count dropped dramatically. It was so low that the doctors were very concerned about my health. So, over time they continued monitoring it. They noticed that when I would get sick my white count would come up and fight off the illness so they eventually decided it was alright.
Another effect on me from all the drugs they had me on was what happened to my hair. My hair had always been naturally curly prior to the brain tumor but now it was very unmanageable. I remember my mom getting so cross when she would try to curl my hair. My hair wouldn't hold a curl and when she would take me to get a perm my hair would only burn and wind up in worse condition. My hair remained unmanageable until 1998 when I shaved my head completely bald and started over with a new head of hair. It is much more manageable now.
I remember one day when my parents received an emergency call from Dr. H., my blood doctor. We had gone to Great Falls that day and they had drawn my blood. As it turned out my seizure medication had dropped drastically and he was concerned about my safety. So my parents immediately rushed me back to the hospital. They eventually took me off the seizure medication.
My mom spent so many hours on the road driving me back and forth. She was so fatigued that she actually fell asleep at the wheel one night as we were returning home. Miraculously, she awoke when the car hit the rumble strips on the edge of the highway. We were crossing the span between Great Falls and Chester via the "Chester cut across" (as it was known by locals.) It was a road that people took off the beaten path to make the trip between Great Falls and Chester shorter. My parents always used it. Our home was about an hour and a half from Great Falls so there was a lot of driving. I remember the motor blew out of my parents' old blue station wagon from all those trips.
My family was instrumental in my early recovery. While I was still hospitalized they were right there beside me, encouraging me and refusing to allow me to give up. When I was so tired and just wanted to quit because I could hardly handle the physical demand on my body and the pain I was experiencing in my muscles during the physical and occupational therapy, my mother, stepfather and my little sisters would encourage me and push me to keep trying. We had all been raised to be hard workers so they knew I could do it but I know that I would have given up if it hadn't been for them.
I still remember how tired I would become during those therapy sessions, at the time I didn't foresee the reason for so much physical exertion, I didn't want to live anymore anyway. Thank God for my family.
My mom took me to the deaf and blind school in Great Falls that summer for the summer orientation program. At the school they tried to force me to learn braille. This proved impossible however. The feeling in my fingertips was almost nonexistent and I had such short term memory loss, it was impossible for me to remember what those little dots meant, if I managed to feel them at all. I kept insisting that I knew God wasn't going to leave me totally blind, He wouldn't do that to me. They told me that I couldn't count on that. I guess He proved them wrong.
Once I was at home again and things began to return to normal (if you can call it that) I was sent back to school with my sisters in the fall. Because of the brain tumor the decision was made that I should be held back a year in school so I began the year in Mr. M.'s sixth grade class again. One good thing about this was that I was permitted to stay home from school on days when I was just too tired to go. My brain and body were exerting a lot of energy in those early days not only to start the healing process but also to grow since I was just entering adolescence. Since I had already technically passed sixth grade the school was more lenient with me about how much school I missed.
Mr. M.'s face is the last one I remember seeing clearly before I went blind. I remember that last day of school when I had the final headache. He had taken me to the school office so I could rest on the couch while I waited for my mom to get there to take me to the doctor (this had been the regular routine when I would have one of my headaches at school.) I remember looking up at him while he ran copies at the copy machine and he inquired if I would be alright. Mr. M. had also been my coach for girls' basketball that year. He was a great teacher and coach.
That fall of 1989 when I entered his class for a second time I was put in with my little sister's class.
Excerpted from "He Works All Things Together ..." by Rebecca Strom-Stewart. Copyright © 2013 Rebecca Strom-Stewart. Excerpted by permission of AuthorHouse.
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Table of Contents
Part One What Came Before.................... 1
Part Two The Dark Years.................... 9
Part Three Losing Everything I Had Left.................... 55
Part Four The Approaching Dawn.................... 59
Part Five A New Beginning.................... 109
Closing Thoughts.................... 119
Author's Note.................... 121
About the Author.................... 123