During a recent visit, my neurologist expressed amazement at the level of activity I maintain and the numerous accomplishments I have achieved, despite the challenges posed by my various health conditions and disabilities; calling me "high functioning," a label that fails to capture the immense stubbornness, effort, and exhaustion that lies behind my successes.
My journey has been marked by a multitude of obstacles, including being diagnosed with ADHD and dyslexia in school, navigating the challenges of COPD, and adapting to the progression of a neurologic movement disorder. I also face discrimination and hardships as a transgender woman. I’ve was kicked out of the military under the "Don't Ask, Don't Tell" was financially devastated by a divorce and the 2008 economic crash.
Despite these challenges, I have never stopped pushing myself. Even has my health has deteriorated and my movement disorder has progressed, I’ve continued engaging in a wide range of activities. I serve on a board, am a Human Relations Commissioner, am the CEO of my own company, engage in activism and advocacy for transgender, LGBTQ+, and disability rights, I write articles, poetry, and stories, create and deliver workshops, develop policy, and even take on acting roles. But what people don’t see is the tremendous effort required to accomplish these tasks and engage at this level.
For me, even basic tasks such as thinking, sitting upright, and walking demand a significant expenditure of energy. The neurological component of my movement disorder has made it difficult to find words, speak, and remember things while the physical side of it makes walking, writing, typing, and sitting difficult. While others can engage in these activities effortlessly, I must constantly push myself to overcome my limitations. Exhaustion is a constant companion.
Yes, I have accomplished a lot, and I do remain very active, engaged, and productive. Which is why my neurologist called me “high functioning’. But the term "high functioning" is used to describe individuals with disabilities who have cognitive abilities in the average range. It is a problematic label because it underestimates the challenges faced by those it is applied to and undervalues the extreme amount of effort it takes to function at that level, leading to unrealistic expectations about their capacity to function in various environments.
The "high functioning" label places undue pressure on individuals with disabilities to perform at a level deemed "normal" by societal standards. This expectation can be unrealistic and fails to account for the unique challenges and experiences of each individual. It also means that we are often overlooked when it comes to support, services, assistance, and accommodations that would make it easier for us to function and participate in everyday activities.
I have also been called brave and resilient for living openly as a transgender woman, but it is important to note that being transgender itself is not a cause of my exhaustion. Rather, it is the constant need to navigate hateful rhetoric in media and from religious and political leaders, engage in the emotional labor of defending my rights, and practice self and community care to maintain emotional well-being. That level of emotional labor is exhausting for every activist and advocate I know who is also a member of the community they are advocating for.
From an outside perspective, people often comment on my resilience and positive outlook in the face of adversity. However, what they mostly don’t see are the invisible struggles that I navigate every day – the sheer exhaustion that results from constantly pushing against the limitations caused by my health conditions and the emotional toll of my activism and advocacy work.
My journey may indeed be a testament to the power of my stubbornness, determination, and perseverance in the face of adversity, but it is also a reflection of how our society forces individuals to push themselves to function at levels that are often unrealistic and unsustainable. I’m exhausted by the effort it takes to be resilient and “high functioning.” But I’m too stubborn to give up.
All of these experiences and challenges have contributed to my most recent poem ‘Exhaustion’. If you would like to read it and more of my work, please visit my website, jessicajaymespurdy.com, where you can access my poetry with a $12 annual subscription.
As I continue to focus on my health and slowly return to creative writing, I plan on adding anywhere from 6 to 24 new poems to my website over the next year, depending on my capacity. Also, I am resuming work on my next collection of poetry, ‘Shooting Stars & Origami Swans’.
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