My Illness Story
There is a story that we tell teens where I work. It is a closure activity when the teen has reached their last session with their child life specialist. It requires a tree slice round. You know what I'm talking about? The wooden, round plaques that have become oh-so popular in rustic weddings as center pieces. Or just as awesome, engraved plaques. Yes, those! The possibilities are endless with these little slices of wood. And the possibility we use it for. . . is for its story.
Have you ever really looked at a tree slice or a stump? There are the rings, of course, which signify how long the tree has lived, but furthermore, within those lines are brown or dark marks. Little marks. And sometimes big marks. Those marks signify when a tree had a really tough year. Maybe a drought happened, maybe a plague hit it that year, maybe the sun never showed. We relate this story to children and help them understand that our story is a lot like that tree slice we're holding. We make our way through life and have moments that mark us forever as well. The activity continues by having the teen draw on that slice of wood the moments that have influenced their lives.
I share this story with you today, because my illness is one of my big, brown marks. When I was diagnosed at 14 years old with my autoimmune disease and my kidney disease, I was very scared. I did not see the good in it yet, but I knew I had to fight this. My mindset was always, "Okay, so what are we going to do to fix this?" Don't get me wrong though, there were also a lot of crying with my Momma moments. After a hospitalization and a kidney biopsy, I learned of ANCA-positive pauci-immune glomerulonephritis. Secretly, I always enjoyed people's reactions when I said that out loud. Yes, place me in handcuffs and call me guilty!
With that diagnosis came anemia, high blood pressure, medications, and diet changes. Oh, diet changes! You name it, I had it! (Only joking). Chemotherapy also came my way. The chemo helped freeze my antibodies and keep my immune system from continuing to attack my kidneys. During my time in the oncology unit I met lots of younger children fighting along with me. I didn't know it then, but my time there would later influence my career.
To continue on, it was tough. I lost my hair and I was immuno-supressed. After my treatments, I was required to go into isolation for ten days. I eventually had to wear a wig to keep my bald spots from showing. You can imagine yourself as a teen and how hard that could be to adjust to. And it definitely was. It was hard, but not as hard with so many people supporting me. My family, my friends, my school! I always had amazing support around me and now I can only really remember a lot of the good.
My initial hospitalization lasted a week. As I was leaving the hospital, I stopped by with my family (Mom, Dad, and brother) to visit my grandmother who was also hospitalized at the time. Worst mistake of my life! If I could travel from right now to the past at that moment when I was walking into my grandma's hospital room, I would say, "TURN AROUND, TURN AROUND!" As you know, I was under chemo treatment and I had just received my first dose. My body picked up whatever infection my grandma had and my immune system was unable to fight it off. I was hospitalized for a month. Again, I don't remember too much, but I do remember the throwing up. You always remember the throwing up. I almost died then, but I know God kept me here for something great. Something bigger than my own dreams.
The last stint of my illness before things calmed down and followed a routine for the next 8 years, was a mild stroke. (Also, just a note here. This all happened one thing after the other. All before even graduating from 8th grade). Eventually the medications caused a rise in my blood pressure that led to having a seizure in the middle of my 8th grade English class. Yeah, I know. Great way to say goodbye to 8th grade. Good thing, I never considered this a big deal when coming back to this class eventually. I awoke in the hospital three days later having no recollection of the last few days. Soon enough, I learned that I had suffered a mild stroke. I learned to walk again. To keep my balance. To catch a ball. This is one of the most humbling experiences I have ever had, and I will always be so thankful for it. Learning to walk again at the age of 14, taught me that life is so fragile. Fragile in that everything you know can leave you. I learned to be grateful of the things I don't even think about doing like walking or breathing without pain. I learned to treasure my treasures.
As a young teen who had faced death, I wanted to find my purpose, the meaning of my life. It is normal for adolescents to ask, "Who am I? Where do I fit in? What am I meant to do?" My questions included these, but also included these,"What if I die before I am able to make a difference in the world? How can I help people? Can I do that before I die? What if I die before. . . " It was a very real and normal fear to have. I became hyper focused on making a difference in this world. In high school, I joined many service clubs and volunteered consistently. As I got older and was accepted into a university, I knew I wanted to follow a service career that would make a difference in the world. How I found that perfect fit is another story I will save for later. :)
Now that I am 24 years old and 10 years after my illness, I find that I can't see myself formed without it. I am thankful that I was led to this path, because I am such a happy person because of it. I have found strength in my weaknesses. I have learned to accept all of my emotions. And I have learned to cope. I am so thankful for everything I have and am mindful of every moment. My illness does not define me, but it has influenced me just as any of your experiences have. We all have tough experiences that we should not allow to define us, but influence us and build us up. I always talk about my illness in a very hopeful way, because it truly has brought a lot of good things into my life. And like I said before, I always remember the good.
Have you ever really looked at a tree slice or a stump? There are the rings, of course, which signify how long the tree has lived, but furthermore, within those lines are brown or dark marks. Little marks. And sometimes big marks. Those marks signify when a tree had a really tough year. Maybe a drought happened, maybe a plague hit it that year, maybe the sun never showed. We relate this story to children and help them understand that our story is a lot like that tree slice we're holding. We make our way through life and have moments that mark us forever as well. The activity continues by having the teen draw on that slice of wood the moments that have influenced their lives.
I share this story with you today, because my illness is one of my big, brown marks. When I was diagnosed at 14 years old with my autoimmune disease and my kidney disease, I was very scared. I did not see the good in it yet, but I knew I had to fight this. My mindset was always, "Okay, so what are we going to do to fix this?" Don't get me wrong though, there were also a lot of crying with my Momma moments. After a hospitalization and a kidney biopsy, I learned of ANCA-positive pauci-immune glomerulonephritis. Secretly, I always enjoyed people's reactions when I said that out loud. Yes, place me in handcuffs and call me guilty!
With that diagnosis came anemia, high blood pressure, medications, and diet changes. Oh, diet changes! You name it, I had it! (Only joking). Chemotherapy also came my way. The chemo helped freeze my antibodies and keep my immune system from continuing to attack my kidneys. During my time in the oncology unit I met lots of younger children fighting along with me. I didn't know it then, but my time there would later influence my career.
To continue on, it was tough. I lost my hair and I was immuno-supressed. After my treatments, I was required to go into isolation for ten days. I eventually had to wear a wig to keep my bald spots from showing. You can imagine yourself as a teen and how hard that could be to adjust to. And it definitely was. It was hard, but not as hard with so many people supporting me. My family, my friends, my school! I always had amazing support around me and now I can only really remember a lot of the good.
My initial hospitalization lasted a week. As I was leaving the hospital, I stopped by with my family (Mom, Dad, and brother) to visit my grandmother who was also hospitalized at the time. Worst mistake of my life! If I could travel from right now to the past at that moment when I was walking into my grandma's hospital room, I would say, "TURN AROUND, TURN AROUND!" As you know, I was under chemo treatment and I had just received my first dose. My body picked up whatever infection my grandma had and my immune system was unable to fight it off. I was hospitalized for a month. Again, I don't remember too much, but I do remember the throwing up. You always remember the throwing up. I almost died then, but I know God kept me here for something great. Something bigger than my own dreams.
The last stint of my illness before things calmed down and followed a routine for the next 8 years, was a mild stroke. (Also, just a note here. This all happened one thing after the other. All before even graduating from 8th grade). Eventually the medications caused a rise in my blood pressure that led to having a seizure in the middle of my 8th grade English class. Yeah, I know. Great way to say goodbye to 8th grade. Good thing, I never considered this a big deal when coming back to this class eventually. I awoke in the hospital three days later having no recollection of the last few days. Soon enough, I learned that I had suffered a mild stroke. I learned to walk again. To keep my balance. To catch a ball. This is one of the most humbling experiences I have ever had, and I will always be so thankful for it. Learning to walk again at the age of 14, taught me that life is so fragile. Fragile in that everything you know can leave you. I learned to be grateful of the things I don't even think about doing like walking or breathing without pain. I learned to treasure my treasures.
As a young teen who had faced death, I wanted to find my purpose, the meaning of my life. It is normal for adolescents to ask, "Who am I? Where do I fit in? What am I meant to do?" My questions included these, but also included these,"What if I die before I am able to make a difference in the world? How can I help people? Can I do that before I die? What if I die before. . . " It was a very real and normal fear to have. I became hyper focused on making a difference in this world. In high school, I joined many service clubs and volunteered consistently. As I got older and was accepted into a university, I knew I wanted to follow a service career that would make a difference in the world. How I found that perfect fit is another story I will save for later. :)
Now that I am 24 years old and 10 years after my illness, I find that I can't see myself formed without it. I am thankful that I was led to this path, because I am such a happy person because of it. I have found strength in my weaknesses. I have learned to accept all of my emotions. And I have learned to cope. I am so thankful for everything I have and am mindful of every moment. My illness does not define me, but it has influenced me just as any of your experiences have. We all have tough experiences that we should not allow to define us, but influence us and build us up. I always talk about my illness in a very hopeful way, because it truly has brought a lot of good things into my life. And like I said before, I always remember the good.