Now for those of you that actually read this lil' ole' blog of mine and probably reading the title and wondering, "Where is he going with this?" Well, let me in on the secret! I know I've blogged about this subject before but I'm going to attempt to make this entry much more indepth because I think it's good to remember things like this from time to time to make you realize just how good things are and just how bad they COULD be. I of course am talking about my dyfunctional friend that has stuck with me for the past 21 years, Guillain-Barre Syndrome. Now, I don't suffer from this anymore, it was over as fast as it came but the pain and struggles that I went through during the ordeal were nothing short of sheer torture and grueling agony.
In the summer of 1992, I was your average 10 year old kid. Summer had just begun. School was out and there was nothing but fun in store for the next 12 weeks in my eyes.....or so I thought. One day in June, just before my birthday as a matter of fact, I attended a Pirates baseball game with my family at Three Rivers Stadium in Pittsburgh as one of my birthday gifts. It was alot of fun as baseball games usually are. The atmosphere of the fans cheering, vendors selling food and drinks and the sounds of the actual game itself. On our way home in the car, my mother spotted the LifeFlight helicopter overhead and she asked me out of the blue, "John, would you ever like to be on that?" I abruptly answered, "No!" What I didn't realize was that in the very near future, that would become a reality.
The next day, I came in from a long day of playing outside with my friends and came down with an awful headache, which I had attributed to the hot sun and allergies. My mom had given me tylenol and told me to lay down for a bit. After getting up from my nap, I had felt worse that before I had laid down. My body was very hot and my limbs were a little bit tingly....the kind of feeling you have when your foot falls asleep, only in my case, all of my legs were slighty this way. My temperature was immeadiately taken by my mom and it was extremely high, probably around 103. We rushed off to Monsour Emergency Room in Jeaneatte, where a few tests were done and ultimately I had won a one-way trip to Children's Hospital in Pittsburgh to continue testing. How would I get there you ask? Remember that LifeFlight helicopter? You guessed it. It's funny the way things in our lives have a way of making themselves resurface at the weirdest times.
Years after this had happened, I remember family members telling me that they couldn't watch the helicopter take off due to the wind kicking up stones and dirt. But off I went en route to CHP. While on our way to the hospital, I had slipped into a coma, where I would lie motionless for the next six weeks. The journey had not even begun yet. It's one thing to go to sleep one night and wake up the next morning. Once you open your eyes and get your bearings, you know where you are, are you get your day started. Not the case here. I remembering opening my eyes, and having a TON of people standing over my bed. Some with tears running down there faces, some with a look of shock and awe. I tried to get my bearings and survey my surroundings. I knew I was in a hopsital room of sorts but I really couldn't place anything else. I tried to open my mouth to talk but when I did, silence was all that followed. I COULDN'T TALK! I was starting to panic. When I calmed down, I learned that I had been 'sleeping' for the last six weeks and hooked up to a respirator to help me breathe. I also had found out by trial and error that I couldn't feel or move my legs at all. They had just stopped working. I was very scared thinking that this was going to be my life from now on. I also remember thinking that these things don't happen to a 10 year old kid! I had my entire life ahead of me, I had dreams, wishes and things I wanted to accomplish! This wasn't happening! But it was and there was NOTHING that I could do to change that.
As the days went by, no one could figure out what it was that I had, going from this test to that test. Being poked, prodded and having tubes coming from every orifice is not my idea of fun. I was very confused and frightened. Looking back in retrospect, most of the tests I don't remember but the ones I do remember usually were accompanied with some sort of physical pain, pain that only a man can understand....if you get my drift! Spending a few weeks in the ICU was grueling, mainly because my doctors didn't have a name for this illness yet. Morale in the family was grim but hopeful. I think one thing for any family to get through an ordeal like this is trying to cling on the some sort of hope that everything is going to turn out okay. Hope is really something you have to have to get through life. It we don't have hope, we just die.
The next few weeks drug on, and finally one day, I found out that I would be leaving CHP to go to another medial facility. One equipped to deal with the deficits and physical ailments that I was suffering from. This place catered especially to children with physical as well as other issues that they may be suffering from. This place was called The Rehabilitation Institute of Pittsburgh or TRI for short. I was brought to TRI by ambulance, and wheeled into the lobby. I was immadiately taken up to the 4th floor and put into an isolation room, where I would remain for quite some time. I remember day after day, the endless television marathons of The Simpsons videos that my parents had brought me, along with various cards and well wishes from people in my family and the community where I lived. It was amazing, people I didn't even know were sending me cards, prayers and such. At that moment I knew, I wasn't supposed to live any ordinary life. I was given a second chance at life and if I ever got back on my feet, I wasn't going to waste it.
As time passed, probably about 3-4 weeks after I entered TRI, I was taken out of isolation and brought down to the 3 Shady Unit. This unit had other kids who had diagnoses of varying degrees. No two were alike. There were about 6 other kids in the unit, maybe. A few stand out in my mind, one boy's name was Michael. You may remember seeing him in old commericals for the Institute about the dangers of weraing a bike helmet and raising awareness. He was a really cool kid, he was around my age and in a wheelchair, just like me. We became friends and did similar things at the institute that we enjoyed. Another kid was names Walter. Years later, I found out that I had actually attended the same school as his sister who I also graduated high school with. He was very fond of the Wizard of Oz at the time, and had puppets that accompanied each of the characters. He did the voices for all of them. I also remember a few of the nurses on the unit.....some nice, some, well, not so nice, lol. One in particular, Margie, was extremely nice. She always made sure that I was comfortable and I had everything I needed.
Then there were the volunteers. Two of my favorites were names Teddi and Frank. You could tell that they enjoyed their time at the Institute each week when they came on Fridays. I looked forward to seeing them each week. I remember we played games, went on trips to the circus, the mall, movies and other places as well. And sometimes we just hung out on the unit. I also liked when the hospital would bring in the puppies for Pet Therapy. Those spunky little animals gave each of us on the unit and injection of what it is that made us kids....even if it was short lived.
When you can't use your legs, life is pretty dull. I had no idea up to that point in my life what physical therapy was or how hard it was going to be but I soon found out with only days being on the unit. I remember meeting my therapist, Leslie. It was her job to help strengthen the muscles in my legs enough to where I could bear weight on them again. To me, PT was playtime. It really didn't seem like work, recess was more like it. Then there was occupational therapy as well. My therapists Mary Jo and Lydia's jobs were to help me gain use of my fine motor skills and strengthen the muscles in my hands. I also had sppech therapy as well. Before I got to TRI, I had a tracheostomy. This is where a cut is made in the middle of your throat to aid in breathing. Speech therapy was a bit of a challenge, but what choice did I have? My thearpist, Sue, was nothing short of awesome. She loved talking about music, especially James Taylor, who she loved. I remember we took a field trip to the Musuem of Natural History in Pittsburgh as a reward for doing well in my sessions. They also wanted me to LOSE weight! I had a dietician I met with from time to time and was put on a diet plan. The system they used was the RED-YELLOW-GREEN foods system.
I sometimes think it's odd that I can remember all these little details, but again, this was a major part of my life, even though I don't really remember all of the particulars.
After about 3-4 months of intensive therapies, medical testing, etc. I finally had reached a point where I was at a functioning level. The operative word here is functioning not normal. Just because someone if at a functioning level does not mean in any way, that they are able to run the Pittsburgh marathon. I remember the subject of going back to school was discussed and I was to try and inpatient school called CABLE. The teacher, Teri, helped me to gain some knowledge on skills that I had lost. Needless to say, I was too advanced for CABLE, so I returned to my home district to be home schooled for a while. After being home schooled, I returned to the 5th grade with my school mates.
As years' passed, and I got older, I have noticed that this disorder is always showing me things that I have to learn about myself. For instance, my physical structure is thrown off. My alignment is somewhat 'off' and when I walk, my gait is askewed. Sometimes my memory tends to forget things, some of that is probably age! But I learn from what I have to deal with and that's it.
Flash forward to present day. In the above paragraphs, I mentioned TRI. TRI changed it's name in the early 00's to the Children's Institute. Remember what I also said above about things presenting themselves in different ways at the weirdest times? Well, in 2009 I had been working as a Teacher's Assistant in a local school district when I saw a job opening at the Institute. Needless to say, I got hired. I am currently working at the very same place that helped me so many years ago. My story has totally gone full circle at this point in my life. And most of the people I mentioned above, still work there. Talk about deja vu, every day it is a definite shock as well as a miracle that I've gotten to the point in my life that I am able to help the very same kind of kids that I was with as a patient. It also forced me to pursue a career in Physical Therapy as well, which I am currently in school for.
Life is a funny thing. Everybody has a different hand they get dealt. The funny thing is that the 'dealer' of the cards already knows what cards you are going to keep and which ones you are going to throw away. What do I plan to do with mine? I want to be a beacon for those who are struggling to get back on their feet. A lighthouse to help guide the way back to a functional and meaningful life.
In the summer of 1992, I was your average 10 year old kid. Summer had just begun. School was out and there was nothing but fun in store for the next 12 weeks in my eyes.....or so I thought. One day in June, just before my birthday as a matter of fact, I attended a Pirates baseball game with my family at Three Rivers Stadium in Pittsburgh as one of my birthday gifts. It was alot of fun as baseball games usually are. The atmosphere of the fans cheering, vendors selling food and drinks and the sounds of the actual game itself. On our way home in the car, my mother spotted the LifeFlight helicopter overhead and she asked me out of the blue, "John, would you ever like to be on that?" I abruptly answered, "No!" What I didn't realize was that in the very near future, that would become a reality.
The next day, I came in from a long day of playing outside with my friends and came down with an awful headache, which I had attributed to the hot sun and allergies. My mom had given me tylenol and told me to lay down for a bit. After getting up from my nap, I had felt worse that before I had laid down. My body was very hot and my limbs were a little bit tingly....the kind of feeling you have when your foot falls asleep, only in my case, all of my legs were slighty this way. My temperature was immeadiately taken by my mom and it was extremely high, probably around 103. We rushed off to Monsour Emergency Room in Jeaneatte, where a few tests were done and ultimately I had won a one-way trip to Children's Hospital in Pittsburgh to continue testing. How would I get there you ask? Remember that LifeFlight helicopter? You guessed it. It's funny the way things in our lives have a way of making themselves resurface at the weirdest times.
Years after this had happened, I remember family members telling me that they couldn't watch the helicopter take off due to the wind kicking up stones and dirt. But off I went en route to CHP. While on our way to the hospital, I had slipped into a coma, where I would lie motionless for the next six weeks. The journey had not even begun yet. It's one thing to go to sleep one night and wake up the next morning. Once you open your eyes and get your bearings, you know where you are, are you get your day started. Not the case here. I remembering opening my eyes, and having a TON of people standing over my bed. Some with tears running down there faces, some with a look of shock and awe. I tried to get my bearings and survey my surroundings. I knew I was in a hopsital room of sorts but I really couldn't place anything else. I tried to open my mouth to talk but when I did, silence was all that followed. I COULDN'T TALK! I was starting to panic. When I calmed down, I learned that I had been 'sleeping' for the last six weeks and hooked up to a respirator to help me breathe. I also had found out by trial and error that I couldn't feel or move my legs at all. They had just stopped working. I was very scared thinking that this was going to be my life from now on. I also remember thinking that these things don't happen to a 10 year old kid! I had my entire life ahead of me, I had dreams, wishes and things I wanted to accomplish! This wasn't happening! But it was and there was NOTHING that I could do to change that.
As the days went by, no one could figure out what it was that I had, going from this test to that test. Being poked, prodded and having tubes coming from every orifice is not my idea of fun. I was very confused and frightened. Looking back in retrospect, most of the tests I don't remember but the ones I do remember usually were accompanied with some sort of physical pain, pain that only a man can understand....if you get my drift! Spending a few weeks in the ICU was grueling, mainly because my doctors didn't have a name for this illness yet. Morale in the family was grim but hopeful. I think one thing for any family to get through an ordeal like this is trying to cling on the some sort of hope that everything is going to turn out okay. Hope is really something you have to have to get through life. It we don't have hope, we just die.
The next few weeks drug on, and finally one day, I found out that I would be leaving CHP to go to another medial facility. One equipped to deal with the deficits and physical ailments that I was suffering from. This place catered especially to children with physical as well as other issues that they may be suffering from. This place was called The Rehabilitation Institute of Pittsburgh or TRI for short. I was brought to TRI by ambulance, and wheeled into the lobby. I was immadiately taken up to the 4th floor and put into an isolation room, where I would remain for quite some time. I remember day after day, the endless television marathons of The Simpsons videos that my parents had brought me, along with various cards and well wishes from people in my family and the community where I lived. It was amazing, people I didn't even know were sending me cards, prayers and such. At that moment I knew, I wasn't supposed to live any ordinary life. I was given a second chance at life and if I ever got back on my feet, I wasn't going to waste it.
As time passed, probably about 3-4 weeks after I entered TRI, I was taken out of isolation and brought down to the 3 Shady Unit. This unit had other kids who had diagnoses of varying degrees. No two were alike. There were about 6 other kids in the unit, maybe. A few stand out in my mind, one boy's name was Michael. You may remember seeing him in old commericals for the Institute about the dangers of weraing a bike helmet and raising awareness. He was a really cool kid, he was around my age and in a wheelchair, just like me. We became friends and did similar things at the institute that we enjoyed. Another kid was names Walter. Years later, I found out that I had actually attended the same school as his sister who I also graduated high school with. He was very fond of the Wizard of Oz at the time, and had puppets that accompanied each of the characters. He did the voices for all of them. I also remember a few of the nurses on the unit.....some nice, some, well, not so nice, lol. One in particular, Margie, was extremely nice. She always made sure that I was comfortable and I had everything I needed.
Then there were the volunteers. Two of my favorites were names Teddi and Frank. You could tell that they enjoyed their time at the Institute each week when they came on Fridays. I looked forward to seeing them each week. I remember we played games, went on trips to the circus, the mall, movies and other places as well. And sometimes we just hung out on the unit. I also liked when the hospital would bring in the puppies for Pet Therapy. Those spunky little animals gave each of us on the unit and injection of what it is that made us kids....even if it was short lived.
When you can't use your legs, life is pretty dull. I had no idea up to that point in my life what physical therapy was or how hard it was going to be but I soon found out with only days being on the unit. I remember meeting my therapist, Leslie. It was her job to help strengthen the muscles in my legs enough to where I could bear weight on them again. To me, PT was playtime. It really didn't seem like work, recess was more like it. Then there was occupational therapy as well. My therapists Mary Jo and Lydia's jobs were to help me gain use of my fine motor skills and strengthen the muscles in my hands. I also had sppech therapy as well. Before I got to TRI, I had a tracheostomy. This is where a cut is made in the middle of your throat to aid in breathing. Speech therapy was a bit of a challenge, but what choice did I have? My thearpist, Sue, was nothing short of awesome. She loved talking about music, especially James Taylor, who she loved. I remember we took a field trip to the Musuem of Natural History in Pittsburgh as a reward for doing well in my sessions. They also wanted me to LOSE weight! I had a dietician I met with from time to time and was put on a diet plan. The system they used was the RED-YELLOW-GREEN foods system.
I sometimes think it's odd that I can remember all these little details, but again, this was a major part of my life, even though I don't really remember all of the particulars.
After about 3-4 months of intensive therapies, medical testing, etc. I finally had reached a point where I was at a functioning level. The operative word here is functioning not normal. Just because someone if at a functioning level does not mean in any way, that they are able to run the Pittsburgh marathon. I remember the subject of going back to school was discussed and I was to try and inpatient school called CABLE. The teacher, Teri, helped me to gain some knowledge on skills that I had lost. Needless to say, I was too advanced for CABLE, so I returned to my home district to be home schooled for a while. After being home schooled, I returned to the 5th grade with my school mates.
As years' passed, and I got older, I have noticed that this disorder is always showing me things that I have to learn about myself. For instance, my physical structure is thrown off. My alignment is somewhat 'off' and when I walk, my gait is askewed. Sometimes my memory tends to forget things, some of that is probably age! But I learn from what I have to deal with and that's it.
Flash forward to present day. In the above paragraphs, I mentioned TRI. TRI changed it's name in the early 00's to the Children's Institute. Remember what I also said above about things presenting themselves in different ways at the weirdest times? Well, in 2009 I had been working as a Teacher's Assistant in a local school district when I saw a job opening at the Institute. Needless to say, I got hired. I am currently working at the very same place that helped me so many years ago. My story has totally gone full circle at this point in my life. And most of the people I mentioned above, still work there. Talk about deja vu, every day it is a definite shock as well as a miracle that I've gotten to the point in my life that I am able to help the very same kind of kids that I was with as a patient. It also forced me to pursue a career in Physical Therapy as well, which I am currently in school for.
Life is a funny thing. Everybody has a different hand they get dealt. The funny thing is that the 'dealer' of the cards already knows what cards you are going to keep and which ones you are going to throw away. What do I plan to do with mine? I want to be a beacon for those who are struggling to get back on their feet. A lighthouse to help guide the way back to a functional and meaningful life.
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