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October 30, 2015

At 13 Years Old I Was Given 3 Months To Live - Here's Why I Never Gave Up

When you think of a teenager, you probably think of someone who's in high school, someone who plays sports or participates in school activities, someone who has homework on the weekends or someone who hangs out with friends. For most teenagers, that's a pretty normal life. I mean, honestly, that's what the life of a teenager should be. The last 5 years of my life has been anything but that. Since the age of 13 years old, I've been forced to take on health issues that haven't let up. I've been forced to drop out of high school and leave my friends who I miss so much. I've been forced to grow up much faster than anyone else my age when I know I should just be a kid. To be honest, the last 5 years have been hard. My life hasn't been normal and I'm very well aware that it's not normal at all. But what many people don't know is what I experienced at the age of 13 years old. A lot of people don't know that I'm very lucky to be here today because 5 years ago, I was only given 3 months to live. I was given a very short amount of time where I could have given up, but instead, I chose not to.

In the Summer after 8th grade alone, I was quickly approaching my death bed. In 6 months time, I rapidly lost 25 pounds. I had zero energy to wake up in the mornings, I couldn't get out of bed to see my friends, and most important to me, I couldn't play sports. All these things were happening for unknown reasons at the time and I was starting to realize that these things were only getting worse. You may be thinking, "hmmm...do you think it could just be untreated Celiac Disease?" At the time, I was really hoping that this might be the answer. Sure I had been on a gluten-free diet for 4 months, but maybe I was still healing and it would take some time to get better. I was hopeful this was it, but once my legs, heart, lungs, stomach, eyes, and the rest of my body started to fail, I knew it would be something much worse.

Symptoms that started off as fatigue turned into symptoms like losing vision in part of my eye, losing the ability to walk properly, and losing the ability to talk or put together sentences. From there on out, it became a constant battle to go to school, to wake up in the morning, or to even get out of bed. The worst part was that no matter what I tried, every doctor continued to say I was a perfectly healthy kid. What I thought would be resolved in a month continued on for a year. I saw countless doctors only to be told over and over again, "there's nothing wrong with you. You're a perfectly healthy kid." As a 13 year old, I was frustrated and I was very confused. At this point in my life, I really did want to give up.

Talking about this topic gets me frustrated because I know I'm not the only one who goes through this in life. I mean I was only 13 years old. I shouldn't be worrying about, "Will I be in pain today?", "Will my legs work today?", or "Will I even wake up tomorrow?"  Being a young teenager with nothing to look forward to each day, what was the point of trying anymore? I had nothing to look forward to because I really didn't think I'd ever be able to perform normal tasks again. Having the energy to get up in the morning was now impossible and this was all at the age of 13 years old. I should be out with friends, I should be learning in school. But no, instead, I was stuck to my bed only to see myself getting worse. I knew that honestly, if I continued down this path, it probably wouldn't leave me much of a life left to live. I was ready to give up because I felt that there was really no choice left. All my options were gone until I arrived in the emergency room in October of 2012. There I would discover that I was right all along and that there would be little time left for me after all.

To say I'm blessed to be where I am now would be an understatement. If it wasn't for my mom and the doctor who actually listened to me, I wouldn't be here today. At the time, I was told I had a rare adrenal disorder that couldn't be cured. They told me my adrenal glands did not function at all and I would have to spend the rest of my life learning how to manage my symptoms. 3 different types of medicine, 3 times a day, all different doses based on my judgement. Without it, I would not live. Without it, I would only make it 3 month. Since I was the first person known to have this type of disorder, I wasn't really given much instructions at all. I didn't know what this entailed for my future but I honestly didn't care. Just a few days earlier I was ready to give up. I was ready to call it quits because I knew my body couldn't take much more. At this point in my life, I was ready to take every action possible to make sure that I was going to live.


My fine line with depression
Depression has never been that big of a problem for me as I know it is for many people. But to say I was unhappy when going through all this is of course true. It was a very fine line. What I experienced was (and will most likely remain) the 3 most difficult years of my life. Managing my symptoms took me 3 years to get under control and I'm still working on figuring it out today. I missed out on all of the things most high schoolers get to experience. School dances, playing sports, hanging out with friends, were all things I missed out on. Do I resent not getting to do these things? Sure. Do I wish I didn't have these problems so I could actually be a normal high schooler? Of course. But sitting here pouting about it is not going to change that outcome. I don't look back on what I missed because I know there's nothing I can do to change it now. The only thing I can do is reflect on what that time did for me and know that without it, I wouldn't be who I am today.

It's apparent that these illnesses would be a struggle for anyone to deal with at any age. Even now I still have some days where I'm unable to walk, some days where I'm unable to talk, and some days where I'm unable to move or function at all. Despite all these things I deal with every day, I still choose not to give up. I wake up every single day blessed to be alive. Blessed to have a mom and dad who care about me so much. Each day is a new beginning because each day is a new day to better myself. I could easily pout about my situation and ask "why me?" In fact, sometimes I do. But instead of letting my health and struggles control me, I say no. I control it. I control my life and I control my health even when it spirals out of control. I was forced to grow up a lot faster than I wanted to at the age of 13 years old. But you know what? That's ok. Because I made it. I never gave up and I'm here today. I never gave up on myself because I know I have a purpose in this world. Each struggle is different and each person overcomes their struggles in their own way. Whatever your struggle may be, never give up on yourself because only you were meant to overcome it. 

9 comments:

Rebecca Pytell said...

Wow Taylor, thank you for writing this! You're a fighter and you are so strong and such an amazing young man!
The last paragraph is exactly what I've been needing to read (and believe) myself for the past year. Thank you <3 xoxo

Taylor Miller said...

You're welcome Rebecca! I know so many people deal with a lot of hard things in life, (even if they aren't like mine, they're still hard), and need a little extra strength to get through it. Glad I could help :)

mary kate G said...

Taylor,
I have a very similar story!
I have CRPS and MTHFR, celiac, Adrenal failure. my freshman year of highschool I was a level 10 national gymnast then by the end of that year I was wheelchair bound loosing rapid weight and unable to move. I turned to functional medicine and nutrition which got me out of a wheelchair. I manage my symptoms each day with vitamins and meds and do things differently than most. its amazing when I meet people that truly understand! thank you

Casey Cromwell said...

Thank you for sharing such a personal story, Taylor. Life isn't easy with any medical condition, not to mention when it can't be easily diagnosed. I always admire your perseverance - if illness does anything, it makes us purty dang badass!

Debbie said...

Yes thank you for sharing. I can relate going years of being sick and being told nothing is wrong with me. Even one dr told me as a little girl that I was a faker. I believe my family even believed that. Just 2 years ago I went on a gluten free diet and helped me tremendously. I am now 57. There might be something else going on though. But I'm glad I came accoss Taylor's story. Taylor went though a lot more than I ever went though. This story really helps me

Ellen Slater said...

That last paragraph is 100% where I am in my life. Sometimes it's hard to accept that it will always be my life, but it likely will be - and I'm lucky despite that. Thanks for sharing!

Taylor Miller said...

You're welcome all :)

Kristin Knowles said...

Wow, kiddo! You are pretty amazing. There are those of us that are older, and think we're wiser, that can't put into words what you did. Keep up the good work and never give up. You are inspiring people you don't even know. Thank you!

Tessa Brinkman Gilmartin said...

Thank you for sharing this Taylor. Your an inspiration to keep fighting and nwver give up!!! My teen was finally diagnosed at 13 as well in her 8th grade year. She was deteriorating very rapidly and had we not pushed for her testing for celiac, she would not have made it. She does high school online, cause it was too physically draining for her, and she would spend 2 or 3 days a week stuck in bed. Depression is still a big issue, but we are working on it. I wish Drs would understand that just changing to a GF diet does not make all the symptoms or effects of an autoimmune disease go away. There are hard days, but we just have to keep looking ahead and working through them.

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