Welcome Everyone, I hope that you find this page fun and inviting. Hello, my name is Jamie, I am a T-10 incomplete paraplegic and I’d love to share with you a little history of my life’s journey and the story of how I came to be paralyzed. So I was born one cold December day in 1977. Soon after my birth I started having epileptic seizures. I distinctly remember my Mom telling me stories of how tiny I was and how my body would go limp in her arms and I would start shaking all over. We lived almost an hour away from any hospitals and Mom lived in constant fear and worry. The doctor’s struggled to find out what was causing all of the seizures and complications until I was two years old and they discovered I had hydrocephalus. According to the National institute of Neurological Disorders and Stroke – “Hydrocephalus is abnormal build up of fluid deep in the ventricles (cavities) deep within the brain. This excess fluid causes the ventricles to widen, putting pressure on the brain’s tissues. Cerebrospinal fluid (CSF) is the clear, colorless fluid that protects and cushions the brain and spine.” You can find more on the Institute in the link below.
After they discovered that I had hydrocephalus, they decided to do some further testing and research on me and discovered that I was actually born with both Spina Bifida and pretty significant scoliosis. Did you know that there are four types of Spina Bifida? The four types of Spina Bifida are occulta, closed neural tube defects, meningocele and myelomeningocele. You can see the different types in the image I have attached. I have occulta which means “hidden” or inside, which is how they didn’t know until I was two years old. Please check out the link from NINDS and the Scoliosis Blogbelow for more information.
At age 2 when they discovered the Spina Bifida and scoliosis I was fitted for a back brace and then sent to see some neurological specialist. The first place I doctored was in Delaware and that doctor referred me to an actual Spina Bifida Clinic located in Pittsburgh, PA. That is where I met my dear friend Doctor Donald Reigel. At age 5, I underwent my first surgery to fuse my spine. Doctor Reigel explained to my parents that I may never walk again following the surgery and that the recovery process would be long and challenging. While sitting beside my bed following the surgery my parents watched helplessly as my left leg began to draw up. There was really no explanation as to how or why my body responded the way that it did but that didn’t stop me, four days after that surgery I was walking up and down that hall like nothing had even occurred. I think that is where my I CAN and I Will attitude came from!
Below is the type of “table” they used in order to create the custom fit back brace. This “table” was terrifying to be strapped onto. Remember I was molded for my braces from the time I was two years old. This image is from ReSearch Gate, you can see more by clicking the link in this post.
Following the surgery and due to my leg drawing up in the way that it did I ended up with a 2 inch shoe lift on my left shoe. Every year the insurance approved for me to get one pair of shoes made with the shoe lift on. Because they only permitted one pair and my parents couldn’t really afford more, I really had to choose wisely so that my shoe could fit into every occasion. At that age it didn’t really matter too much because I didn’t know anything different. Which may also be why I own about 50 pair of shoes now, but we will get into that at another time in another post about fashion fun.
I spent a lot of my younger years having seizures and other health issues including significant asthma problems which kept me in and out of hospitals fairly often. Looking back on my days in the hospital here is what I remember. I remember a cold and horrible room where they always took me to put my IV in, they put me onto a cold metal table and strapped both of my arms out to the sides like a sacrificial lamb. It was terrifying. I also spent a lot of time alone because my parents both had full time jobs and my sister was in school. I used to have to be in an oxygen tent. The oxygen tent has a high flow of oxygen going into it. The hardest part while I was in the oxygen tent was that my parents couldn’t physically interact with me, no hugs, no holding my hand except when they put their hands into these built in gloves. I think this may be where my claustrophobia started, but one can not be too sure about what all creates what we feel and how we perceive things. When they came out with the movie Bubble Boy, I often thought, wow they could of made that movie about me. But I presume Jake Gyllenhaal may have been the better candidate for the role anyways, so I digress. Yes, I’m kidding but it was pretty funny to think I may have been the original “bubble girl.” However, while looking at the history of the oxygen tent they actually began using them back in the 1920’s. The first tent was invented by Leonard Hill according to the RC Journal.
Instead of boring you completely with my whole life history, I will move along to the week of my 11th birthday. Of course, this comes with me telling you a bit of a story. Let me paint the picture for you, I was gowned up and sitting on a stool where the nurse could put he metal discs with some goo onto my scalp with what seemed like a 100 wires to my scalp. This was my EEG for them to determine if I could get off of my medication and also make it so that instead of going to Pittsburgh every four months I would only have to go twice a year and then yearly following that. You won’t believe what happened next. While I was still in the process of getting the metal discs attached to my scalp, I had a seizure! I was at my EEG appointment and while they were still hooking up the discs to my scalp I had a seizure. In case anyone was wondering an EEG is an electroencephalogram that is a test that measures electrical activity in the brain using small, metal discs (electrodes) attached to the scalp. (wikipedia.org) I was devastated to of had the seizure, worst part of this seizure if they would have completed the wiring before it occurred they said they would have been able to tell more about what was causing my seizures and how my brain was responding during the seizure and a lot of other detailed information. I was so upset. I remember apologizing to my Mom over and over again. I knew that this meant more trips, more money and more time off of work for my Mom which created more trouble for them financially and I didn’t want that. I couldn’t believe this happened again. The most important part of sharing this portion of my life is from that day forward I didn’t have another seizure, ever. The following year, I was taken off of the medication and I have lived seizure free ever since.
Skip forward a few years, to age 18. I was working part time in our little towns grocery store and I had just graduated from high school. I was living on my own, ready to settle down and move on into my adult life when suddenly things started going terribly wrong. I woke up and could barely walk, I went to sit down and my right leg wouldn’t bend and my phone was on the kitchen floor and as I went to bend to get it I felt very light headed and dialed up my Mom and Dad right away. I went to sit down at the kitchen table and that’s all I remember, I woke up with Mom standing over me asking if I was ok. I didn’t have a clue what was going on and embarrassing as it is, I had an accident. The pain that was I was feeling was something I had never felt before, I couldn’t sit, I couldn’t lay down, I felt like I was going to pass out and they took me to the hospital. The hospital was not equipped to handle my situation so they sent me to Penn State Hershey Medical Center where I met Doctor Johnson. Doctor Johnson told me that my spinal cord was tethered and that it had “leached out” and grabbed onto other things next to it and I had multiple nerves being pinched including my sciatic nerve which was causing the radiating pain down my right leg. The next day I had my first Tethered Cord Release surgery. I came through surgery fine and was released from the hospital two weeks later and my recovery took about 4 months.
Next, let’s fast forward to age 23, I don’t want to tell you the year because then you will know exactly how old that I am. I had leg length discrepancy surgery. During this surgery they removed approximately 2 inches from my right leg to make my legs the same length. I had a metal femur placed and did about four months of intense physical therapy to learn to walk with these legs that were now nearly the same length. I stopped doing the intense physical therapy when I discovered that I was pregnant with my first born child. This is where my story really starts to change, keep reading because you will not believe it!
The doctor’s said I would never be able to have children so to discover I was pregnant was a very pleasant surprise. I was in a relationship, settled down and ready to start a family so we were excited for the news. I want to share more on Labor a normal response when a female is ready to give birth, however, labor for five days is another whole story. I think you could summarize it as the scariest and most intense five days of my life. We were waiting for the baby to move into the birthing canal so I laid there waiting and waiting. Mid day of the fifth day of labor pain and contractions, we both went into distress. The door to my room flu open and they pulled the cords from my bed placed my iv medications on the bed and gave me a medication. Everything was happening so quickly, I had no idea what was going on. They explained that I was going to have to have an emergency c-section and that there was no time to wait, the time was now. I was on the phone with my one brother at the time and my Mom was sitting next to my bedside. She was always right beside me when I needed her the most. Mom assured me I would be ok, as she always did when things weren’t going as we planned. She was always so calm. I was rushed down the hall and into the surgical delivery room, they were placing a drape over me and there was a lot of pressure I remember a lot of intense pressure and then I remember waking up to a polaroid picture of my Baby Boy! He was a few hours old and I was not permitted to see him until I was out of recovery for 8 hours. He was perfect, ten fingers, ten toes and a miracle! I will share about his story sometime soon!
I had a few minor surgeries between age 23 and our next stop which is age 31, trust me I am getting to the big moment of how I became the check out my new level of living life, I can and I Wheel Jamie that I am now real soon so please, Keep reading…
A brief story of life at age 31, I was working in an autism school as a teachers aide and personal care assistant. I had worked in this career since I graduated college in 2003. My client was having a very rough day and she grabbed my hand and pulled it down over a table with all of her weight. She didn’t mean to hurt me but the moment tore my Extensor Carpi Ulnaris, (ECU) tendon. Which led to four surgeries on my dominant hand and 1 year and 11 months of not being able to use my right hand. Did I mention that I am right hand dominate? It was difficult but again, nothing can stop me! Here builds onto that I can and I will attitude you are going to hear a lot about. I figured out how to cook, clean, and take care of my son with one hand. During this time I did a lot of occupational and physical therapy and wore a Dynasplint for over a year religiously for four hours a day just to be able to turn my hand again. Did I mention that I am blessed beyond measure? After one year and eleven months, I got most of my feeling and use of my hand back. I still have days that the pain is intense but I can use my hand so I won’t complain. I never realized how much I took for granted until I couldn’t use my arm for that extended period of time. I learned to never take any portion of life for granted again.
It was getting closer to my 34th birthday and I had, had a relapse with my body. My right leg had started giving out, I was having a lot of pain in my spine, down the right leg and I was getting the dizzy spells and feeling faint quite often. I went to see a doctor right away because I had just had our daughter and I didn’t want to fall and hurt her or pass out while driving or anything because of the intensity of my pain. They discovered that my spinal cord was tethered again and they said if I didn’t have the tethered cord release surgery soon that my spinal cord may sever itself which would leave me paralyzed. It was not as much of emergency as when I was 18, but a few weeks later I was scheduled for surgery. It was the week before my 34th birthday and I walked into the surgery room pushing my IV pole in my faded blue speckled gown just trying to keep my dignity a bit when the backside always trying to take a peek. (Sorry for the insert of horrible humor, it happens often, I apologize in advance) I climbed up on the table and started my countdown 100, 99, 98, 97, 96…I drifted off to sleep and woke up in recovery about 17 hours later. When I woke up, I instantly requested that someone go and retrieve my mother, something was wrong and I knew it. Mom came into the recovery area, I had her lean down and I told her I couldn’t feel my legs and I couldn’t move at all. I knew then that my path forward was going to be a different one.
Two weeks had passed and I was still in the hospital when a nurse came in and said to my Husband, “You can take her home today.” He said, “but my wife hasn’t even been up to walk yet, how am I supposed to take her home when she can’t do anything?” The nurse snapped at him and said “your wife was paralyzed before she came here.” He was mortified, shocked, and instantly upset at the woman and he said “are you telling me that my wife is paralyzed?, are you serious right now? This is how you are telling me this about my wife?” She told him to calm down, which didn’t create any sense of calm at all. Needless to say, after that, my husband was asked to leave the hospital for a while so he could calm down and collect himself. When he came back to the hospital they had moved me to a whole different floor and he couldn’t find me. He was instantly upset again. I need to explain, during this time I was awake but very heavily medicated and had no control over what was going on. I had no idea where they were taking me to and when or if my husband was going to be allowed back into the hospital. He came back, THANK GOD, they let him come back. My husband is my rock and my safe haven, I needed him to be with me. I was terrified and had just nonchalantly been told that I was in fact paralyzed. I didn’t know that I was not going to be able to walk moving forward, I just thought maybe there was some excessive swelling. I had concerns, yes, but I didn’t know till that moment that they were considering me a paraplegic. I was concerned but this is when I truly found my I CAN and I WHEEL attitude!!! I wasn’t going to let this stop me, I barely let it slow me down, okay wait-let’s talk about that a little later on and find out what happened from that moment on. I promise I will share just not quite yet.
JOIN ME, on the journey through “Climbing the Mountain, One Step at a time! My Journey through the highs, the lows, and all the blows and the mindset of just roll with it till somebody knows,” Or in other words, this thing we call LIFE! WELCOME, to I CAN and I WHEEL!
LINKS: To all items I used the definitions and images from so you can check them out. Education is power! I hope you read more.
https://en.wikipedia.org/wiki/Oxygen_tent
https://en.wikipedia.org/wiki/Bubble_Boy_(film)
https://www.mayoclinic.org/tests-procedures/eeg/about/pac-20393875
I created this place for us to build a community of creativity, communication, encouragement and advocacy. I hope that you enjoy the page. Bare with me as we grow the blog and share wonderful stories, insight, tips and tricks and journal this journey through all things LIFE has to offer. I hope to inspire everyone to find their own I CAN attitude and greet each day with the mindset of I CAN and I Wheel or Will, whichever you prefer!