My Journey

The Meaning of Life!

Question Prompt 3: Your journey to understand what it means to truly be alive - TheWBAwards

Life
My journey has been a doozy. I've gone through many obstacles throughout my life that has made me value what it means to be alive. During my life, I've had to work really hard to get to where I am. Life isn't easy. When life throws you obstacles and hurdles, you have to dodge them by running around them, jump over, go under, or tackle them head on.

Life is a precious thing, it's fragile yet resilient. The body and mind are amazing; they can be damaged yet repaired. Each injury leaves a mental or physical scar, reminders of our journey.

Born
My brother and I were born prematurely and my mother had a difficult pregnancy, almost dying with us. She fought to live and keep us alive. For that I'll forever be grateful. God stayed with us throughout her pregnancy, her delivery, and our lives.

Memory
When I was around 9, I lost my complete memory, resulting in me forgetting everything and everyone, including myself. I didn't remember my parents, my friends, no one. So before that time, I don't remember anything unless someone told me or showed me pictures and videos. So for that portion of my life, I have secondhand memories.

This resulted in having to start over from the beginning. I had to relearn how to speak, eat, walk, and who everyone was. Needless to say, this made everything complicated. I worked my butt off to get back to where I was. I quickly caught up to my peers through my mother, family, teachers, etc. who worked with me regardless of my disabilities.

I was born with autism, hard of hearing, epilepsy, and numerous allergies, which in itself are difficult to deal with.

With each seizure and later chemo treatments, my memory is spotty, but that doesn't keep me from learning all I can. I try to adapt to situations and improve myself even though change is difficult.

I had a major seizure in 2018, that caused me to forget my name for a few days and how to spell it for a week. I was void of thoughts and most of my personality for two months. My mother, doctors, and I were really worried, but I eventually came back to being myself! Praise God!

Things like this show how fragile the mind is and how we shouldn't take memory and personality for granted.

Back surgeries
When I was 14, I developed scoliosis and had to have regular checkups. The next year, my physician found that I had developed spondylolisthesis, which is the slipping of the vertebra (bones in the spine) onto the ones below it. I had slipping and deterioration of the vertebra in my lower back, causing my spine to fall into my pelvis. Had I not been an avid swimmer at the time, I would've gone completely paralyzed. On the X-Rays, you could see my spinal cord from where the vertebra had broke away.

My first back surgery occurred later that year to correct this problem. My surgeon placed rods, screws, and created vertebra from mine that he had fished out of my body because he was concerned about rejection from cadaver bone.

Then 14 months later, I had to have a second back surgery because my screws broke. Apparently the grafting didn't work. I had made this discovery when I woke up temporarily paralyzed.

During the second back surgery, the surgeon had placed six new screws, 2 rods, spacers, wire cage, and mesh. Again, having to go through physical therapy (PT) and learning to walk.

My back problems taught me to not take walking for granted and thank God I'm not paralyzed.

Bone marrow failure/BMT/Immunodeficiency

A few months after my second back surgery, my bone marrow shut down and stopped making red blood cells (RBCs). I had 2.5 years of blood transfusions, cancer treatments and chemos because they couldn't figure out why it happened. I was essentially a human Guinea pig as they tried various treatments to turn my RBCs back on. Hospitals globally studied my case, doing research. I'm even in cryogenic tanks!

Since nothing worked, they had scheduled my bone marrow transplant for the end of the year when I was 18. They didn't think I would live to the next year, so they wanted to do it as soon as possible. At the time of my transplant, I had 3 things killing me: reticulocyte fibrosis (scarring of the bone marrow), iron overload (from the blood transfusions), and not making red blood cells.

I was able to go on a wish trip before my transplant. It was wonderful. It really hits you that, 'this is the last time I'll ever be able to see something like this.' That applies to so many things when you know you're dying. It teaches you that life is something no one should take for granted. You never know how much time you'll have left.

I went through a lot during my transplant. I had received my brother's bone marrow, essentially saving my life. I had numerous reactions that sometimes caused me to hover over the line between life and death. Some nights they didn't think I'd survive. Mom was able to be in my clean room with me for months that I was hospitalized.

I had to go through therapies again after transplant, making 9 total years of PT. As a result of the transplant and treatments, I now have multi organ damage and immunodeficiency.

God and his angels surrounded me throughout my life and I'm here for a reason!

It's important to be grateful for each morning you wake up, for what you have, and for what you've been through. What you go through helps to shape who you are. Find the joys in life, anything that makes you happy, embrace it. Don't be ashamed of who you are!