Unforeseen, extenuating circumstances made me who I am today

By Tessa Kane

Chronic Fatigue Syndrome is a debilitating disease that affects millions worldwide, but lacks a cure. Image courtesy of Vanderbilt University

The first time I heard the word “disability” in relation to my state of being, I was 13 years old in a therapist’s office staring into the two-way glass and struggling to come to terms with that word.

Disabled people were part of a community that I feared and knew very little about.

Growing up is difficult enough, but adding the instability of an ever-changing medical condition and an environment that is anything but accommodating adds a lot more spice to the situation. Learning to accept and value the person that I am, in the body that I have been given, was not an easy challenge.

Four years later, I can appreciate the challenges I faced as learning tools that forced me to become a confident and resourceful young woman. This leads to the discussion of whether my disability is really this evil monster lurking in my central nervous system or is it more similar to the harsh voice of an angry parent? Is it a terrible misfortune or a firm teacher?

I was diagnosed with Chronic Fatigue Syndrome in November of eighth grade. This is a broad and often wrong diagnosis of unrelenting pain and fatigue. A severe illness is what triggered my condition.

Essentially, once I overcame that illness, my brain and central nervous system did not realize that I was not sick anymore, so whenever I tried to exert energy, my body fought against itself and would shut down.

Symptoms that I could only describe as just feeling like every limb weighed a million pounds and being unable to think or focus resulted from even the most relaxed of activities. This idea of being chronically ‘tired’ is often challenging for anyone to wrap their head around which makes getting help and support extremely difficult.

Since then, my basic mantra has become, “Listen, I have to do things in a strange way, but you’ll have to trust that I’ll make it happen.”

I feel as though disability is not the inability to complete tasks or function as a member of society. It is just the inability to complete tasks or function in the same way that the able-bodied world does.

We are supposed to encourage and be proud of our differences until they become an inconvenience for someone else. For instance, if someone takes a few 30-minute increments to take a test instead of an hour and a half straight, they are regarded as being “high maintenance” and need to adjust.

In reality, maybe sometimes it is the world that needs to adjust. Oftentimes, my way of doing things is easier for everyone involved. People just struggle to trust that their method is not the only one that can get the job done.

I believe that God or the universe, whichever you choose to believe in, made sure that I learn every lesson the hard way. I consider myself lucky to be diagnosed with Chronic Fatigue Syndrome because the hurdles and hoops I had to jump over and through have shaped me into a strong willed and compassionate young girl.

I could not always be present in the classroom; my history teacher would mock me to the class when I was not there or give me low marks out of spite because I “looked healthy.”  If it were not me, I would think that life is not fair and that is just the consequences of having a disability.

How hard is it to just sit in class? Well, I got a 97 on his final exam after missing more than 75% of his classes and that is one of the accomplishments that I take the most pride in. Looking back, I can see that the joke is on him.

Although I do not doubt the importance of knowledge surrounding trench warfare utilized in World War II and how the cotton gin sparked the industrial revolution, the most valuable lesson he taught me is to never make assumptions about someone’s capabilities.

I know now that I will never miss out on someone’s valuable ideas and potential just because of our differences. I value my new views of privilege as if they are gold.

I have been gifted an entirely new perspective from that of the privileged, high achieving middle schooler who had never really known any struggles. My views on racism, sexism, ableism, and so many other topics have been flipped completely upside down. I cannot imagine ever giving someone less of a chance to prove themselves or assume that they will fail based on any of these factors.

Privilege also has new meaning to me now. When my father was telling me how he does not understand how he is “just a privileged white man” when he worked two jobs to put himself through college, I told him the presence of privilege does not mean an absence of struggle. The struggle is not stemming from or negatively affected by his race, similar to how he is privileged to not have a disability.

Of course, that does not mean he has no problems in his life, but these problems do not stem from a disability. Although these revelations of mine have come along with maturity, I also believe that my struggles guided me in this direction.

Circling back around to that lovely history teacher, I must include how that student-teacher relationship concluded. I wrote him a letter. I pointed out his unfairness and cruelty while also being a bit vulnerable and letting him in on the struggles I have faced.

I let my anger, frustration, and sadness reflect in every word I wrote to him. I told him how I felt an obligation to speak up not only for myself but also on the behalf of any of his future students that happen to be disabled.

My message got through to him or so it seemed. In all honesty though, how he responded was the least important to me. I pushed out of the small corner that was made for me and demanded to be acknowledged and spoken for. This was a pivotal moment in my life. Now, I feel comfortable to acknowledge my worth and demand better treatment.

This has served me well in multiple aspects. I have broken off unhealthy relationships and felt confident in asking my bosses for a pay raise at work. Being self-assured has aided me in many areas of my life.

All things considered, I am extremely grateful for the disability in my life and how it has affected my life. Sometimes in life you have to leave your comfort zone whether it be by choice

or not and oftentimes this leads to great improvements in character. As years pass and I grow up, I can appreciate the stark white coats and bland tiles of the hospital as a passage into an incredible young adulthood.

Contact Tessa Kane at The Communitarian by emailing communitarian@mail.dccc.edu

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