Confession: I am a quirky nerd
If you have not realized by now, I am a quirky artistic engineer that loves analyzing data. I find joy in figuring out how things work. But that is only half the equation. I also absolutely love being able to explain something in such a manner that you understand it without feeling like your intelligence was insulted.
If there are trends in the data, I want to find them. Every data result has a story or narrative to tell, and I want to share it.
I also believe that milestones should be celebrated, as they acknowledge the journey we have traveled. In 2015, I celebrated the milestone of a Decade of Diagnosis. But even during that celebration, I knew I would be hitting another milestone in another few years. In order to explain that milestone, we need to go back to fifteen year old, newly diagnosed Amber.
A Shower Thought
Have you ever heard of the term “shower thought?” The internet defines it as “a loose term that applies to the types of thoughts you might have while carrying out a routine task like showering, driving, or daydreaming.” It doesn’t necessarily need to be a thought that you thought of while showering, but it is an epiphany that comes out of seemingly nowhere.
Fifteen year old me was newly diagnosed with her entire world shaken. I was trying to come to terms with this incurable, yet “manageable” disease. Suddenly, I was the teenager that could no longer sleep in unless I wanted my entire day ruined. I was trying to figure out this new sensation called “hunger” and the implications of it. And I was doing a “trial by fire” as I tested the limits of what my body could handle during cross country season.
My entire life was consumed with this new information.
Fifteen year old me then had a shower thought epiphany.
There will come a time in my life that I will have lived longer with a diagnosis than without a diagnosis.
Fifteen year old me knew that moment would happen on my 30th birthday. Fifteen year old me then laughed at that thought, because it seemed so far off into the future. When you are in high school, who thinks of turning THIRTY? You want to turn eighteen or twenty-one. Thirty? That will never happen! It is just so far away!
The Nightmare at Age Twenty-Three
I still struggle with picture of my mom in Washington State frantically calling my younger brother and telling him to drop everything and drive a few hours in order to make it to the ER in Texas where the ambulance took me because there was a high likelihood that he would be the last one in my family to see me alive.
I do not think that is a phone call than any parent wants to make.
However, that Adrenal Crisis did not kill me. I came back stronger than ever, with the ability to celebrate a Decade of Diagnosis. But even during that party, the next milestone was weighing on my mind.
Happy Birthday to Me: A Milestone
I typically do not publish my age. This policy started out because I could always pass as much older than I was. I remember being thirteen and guys at the airport thinking I was home from college. When I was a college freshman, no one realized it. Freshman get a bad rap on campus as being overly annoying and needy, and I did not really want to be stereotyped that way. It also helped that I had a few good upperclassmen friends (you know who you are … Adam…) that enabled me to start with an elevated social circle.
As I started my engineering career, many in the industry did not know if I had my masters or just my under-graduate degree. They could not figure out if I was early twenties or mid-twenties, and all of the experience I had navigating the messed up American Health Care system made them further confused about my age.
But this is a milestone worthy of breaking my self-imposed rule.
I am at the point in my life where every moment moving forward, I will have lived longer with this diagnosis than without it.
This time, I am not throwing a big lavish party. There wont be any loud music or crazy shenanigans. I don’t need any elaborate gifts. I plan on celebrating with my brother, the same one (well, only one) that my mom called frantically over six years ago telling him that he might be the last one to see me alive.
Thankfully, the words spoken during that phone call did not come true. I am still here.
I am Clearly Alive.
And I plan on remaining so for as long as possible.