Success has always been a driving force in my life. My parents may absolutely beg to differ with this statement. However, they don’t get access to my thoughts, feelings, and soul. They know what they perceive, but that is generally very different from my truth. Therefore, I am only speaking from my own conscience. I started school a year before my peers. You see, I was the youngest child in my family. Did they start me early because they were tired of having a kid at home all of the time with no breaks? Perhaps. It was a question that I never thought to ask.
The only way to get an age exemption in American public schools is to have the child tested by the school counselor for maturity and intelligence. I remember, as a five-year-old, wanting to pass the test and being excited to learn everything I needed to know so that I would be a success. I didn’t know this at the tender age of five, but I recognize this as ambition and drive now. Success at that very young age was defined as pleasing my parents, and them thinking that I was intelligent.
Invisible Struggles + Ambitions = Success….?
All through school, I clearly remember struggling on the inside. From the outside, I had no worries and no hurries. On the inside, it was all worries and all hurries. I felt like I had to work so much harder than everyone else. Not to mention, all of my classmates were a year older than me. That is a year of more socialization, a year of more brain development, an extra year of experience on this planet. I always lagged socially. I was painfully shy, and I would have a lot of inner negative talk about my shyness. Regardless of the struggle, I pressed on. I wanted that perfect report card, that lunch in the Principal’s office for the “good kids”. I wanted the ‘Student of the Month’ award. Being everything to everyone was my marker for success. It was exhausting!
As I aged out of school and into the workforce, my ambition went wild. Coworkers couldn’t believe my age as I took on leadership roles. They would call me a ‘baby’, and that was just fuel for the fire. This ‘baby’ was their boss. I took a lot of satisfaction in that. I could solve just about any problem, and keep climbing that corporate ladder. Huge increases in salary every year were a given based on my performance. I would gobble up any new responsibility that came my way. I would do my job, and learn other jobs in the office, and still have plenty of time. Was I motivated to an unhealthy level? Definitely After I received the diagnosis of a Cavernous Malformation, I continued to push myself at unhealthy levels, just to prove that I could have this crazy brain disease and still kick ass.
A Heartbreaking Shift & Surviving the Change
If you know my story (and honestly, who doesn’t at this point???), you know that the Cavernous Malformation and subsequent HOD diagnosis decided that my time in the traditional workforce was done. I did go back to work afterward for 19 months, and it was BRUTAL. I was back to working harder than everyone else, just to keep up. Then, I started having new, more debilitating symptoms that forced me out and back onto disability. It was a totally heartbreaking decision for me. Just a year prior, I had been nominated by the Leadership Team at the company I worked for to attend an advanced leadership workshop throughout a full year for up-and-comers in the company. Oh boy, it was a letdown for me to acknowledge that I wouldn’t be able to do it. My internal definition of success was starting to break me.
So, here we are, almost a full year on disability. My employer will terminate me before the end of 2023, as we are all in agreement that I am no longer capable of performing the job that I loved and excelled at. I was no longer a leadership candidate. I am learning that redefining success for myself is not just a good idea, but has become a strategy for survival.
Productivity Obsession
The United States is obsessed with production. KPI’s are wrapped up in everything. Charts and graphs of measurable output are a part of every department meeting. Goals are no longer personal, as employers have co-opted goal-setting. The last year of being an active employee at my work saw a shift in the performance review process. We now had to set goals in our jobs, to be approved by our management, all the way up the chain. We were educated on SMART goals, and our increases relied heavily upon accomplishing those goals. The absolute best way to demotivate a goal-setter is to force goals onto them. I made very small and guaranteed achievable goals. However, my personal goals for my work were extravagant and forced me to try harder and keep going. I was not going to tie my livelihood to a goal that may or may not be attainable.
Some may say that I have only switched professions, as I now lead a nonprofit patient organization. I firmly disagree with that assessment. I am not required to work 40-60 hours a week. In fact, as I write this piece, it is part of my own form of processing hard emotions. I don’t call that work. I call that personal growth that I just happen to share with my community. There is no risk of being fired for not showing up here. I won’t have my pay docked for not being able to finish a task due to overwhelming fatigue. This isn’t work…this is therapy. If my form of processing hard emotions is helpful to others, then I am happy to share! It is hard to dock pay when this is all on a voluntary basis.
Finding New Metrics of Success
Now that success is no longer a title, a pay grade increase, or an office with a window, how do I define it for myself? These days, success looks a little different. It is measured in more things that are really worthwhile. Today, success is:
- Getting out of bed every morning
- Working through my therapies so that I can retain walking unaided as a skill for reading, comprehending, and retaining information
- Meeting new people and asking them for guidance
- Making dinner one night a week
- Reaching out to people who care enough for me to share their struggles with me and check on them
- Remembering a word that escaped me
- Finding more people who thought that they were alone with HOD and leading them to our groups and resources
- Learning that I am the only person that I need to please
This list is subject to change. As my life and health change, so will my parameters of success on my own personal journey.
By Christina Coates, HODA President
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