My Very First Daily Feels

BY: Demetrious McMullen – “Ruler of Androgyny”

I am writing in purple pen. It glides across the paper and shows itself only in sloppy squiggles. I almost never write assignments, papers, or stories like this. I am one to type because it’s much easier for me. I do love purple pen’s though, and I did need something to start off with. My brother, Maximillian, loves purple pens too. He once got an entire box of purple pens for himself in high school. I thought he was so cool.

My name is Demetrious McMullen. I am currently attending SUNY Potsdam, and I am 20 years old.  I am majoring in Theatre, and I am very involved in the Crane School of Music, even though I’m not officially a major yet. I auditioned but did not get in. The vocal major is competitive. I love to perform, and I play various instruments.  I want to audition one last time and see if I can double major.

I am a caregiver and enjoy taking care of people, but I also love teaching.  As a student with special needs, I know what it’s like to have a special education teacher who looks down on their student’s, expecting less from them.  It’s hurtful, ableist, and makes me angry.  I want to be a special education teacher.  I want to be a teacher that treats my students well.  I want to make sure that every student knows they are capable, important, and valued.

I grew up in Harrison, New York, with my mother, Christina, my sister, Victoria, and my brother, Max. My mother raised us on her own, with little money. She was tough, but I wouldn’t be who I am today without that. Good job, Mom :).

In 2016, my first year of college, life changed.  In the beginning of the semester, I found myself unable to walk. I had just received the second part of the new meningitis B shot a little over a week before and I am convinced that it had something to do with the “activation” of my dormant condition (many things can trigger illnesses at any time in a person’s life).  I had to go to the emergency room, the urgent care, and about nine doctors before finally figuring out the base of my problem. I was diagnosed with many different conditions (fibromyalgia, Lyme Disease, etc.) that were either caused by the original problem or simply inaccurate. In 2017, I was finally diagnosed with Ankylosing Spondylitis.

Ankylosing Spondylitis is a form of arthritis in the spine.  If left untreated, my spine would eventually have new bone formation that would fuse my vertebrae into a fixed position. It affects every other joint in my body and is extremely painful. AS is lifelong and cannot be cured. The progression can be slowed down and symptoms can be managed. Many individuals with AS live healthy lives and do not need things much like I do, such as a walking aid.

When I first started having mobility issues, there were a lot of symptoms that seemed unexplainable. I used to fall down at random times and forget what happened the 20 seconds before. I dropped EVERYTHING, my hands were always tremoring, and I had numbness almost everywhere at different times throughout the day. I was dizzy a lot of the time, I had migraine headaches, spasms in my back, eye pain, occasional episodes of seeing black and a long list of other symptoms. Right when I was supposed to begin my next degree, my body basically shut down on me.

I went through many medications. At first, I was given a strong Ibuprofen, then Naproxen and soon after, Hydrocodone. It’s scary that they gave me medication after medication to only try to simmer down my symptoms, while I got worse. One day, I told my family members that I was on Hydrocodone. I didn’t even know what it was. They warned me of how people get addicted to it and told me to get off of it ASAP. If I didn’t talk to them about that medication, I could have had a dependence to it because of the way many doctors hand out dangerous prescriptions like candy.

I got my health figured out when I finally found two doctors at Columbia Doctors. Neurologist, Dr. Vivian Chin, and Rheumatologist, Dr. Teja Kapoor. They were thorough, they listened to my concerns, and they took me seriously. I found out that I also have a small fiber neuropathy in my hands, feet, and legs. It’s permanent nerve damage because of the AS.  Medication helps manage the pain and numbness from it.

Along with my usual meds, my doctors had me try Prednisone, Enbrel, Methotrexate, Humira, and more. Finally, I was put on Infliximab, or Remicade. It is an immunosuppressing infusion that I receive every four weeks now. My mobility improved very much, I’m in a little less pain, and I have some more energy than before. The funny thing is, I am unable to drink alcohol, because I am underage, and I physically cannot with all of my meds, but the pre-meds to my infusions make me go a little wacky! You can see a drunk-ish Demetrious once a month in the infusion center. I should write an entire blog about infusion stories because there are quite a few!

This is going to be the rest of my life. I have a lot of diagnoses that are also related to my developmental and psychological health (Attentive Deficit Hyperactivity Disorder, Obsessive Compulsive Disorder, and Depression) and they are all permanent. I have to take many pills a day, walk with a cane or roll in a wheelchair to classes. Medications for my physical, developmental, and psychological diagnoses help, but they aren’t a perfect fix for it all. I have to have a good environment, a healthy diet, a continuous form of exercise (and yes, I should also make an entire blog about how amazing swimming is for disabilities), positive day to day interactions, and support from loved ones. This is all very important and crucial to having a happy and healthy life. I know that I want that, and I will do best to have it.


Dem

Demetrious McMullen is currently a college student, attending SUNY Potsdam, majoring in Theatre. They are a vocalist, play piano, baritone ukulele, violin, hand percussion, and more. Demetrious is also an actor, photographer, and painter. Demetrious is a caregiver and loves to teach. They want to be a special education teacher one day, and at some point perform their love of the arts.

Demetrious is transgender and created a title for themself of “transmale androgynous”. This is because they are on the masculine side of gender, but is still extremely androgynous. Demetrious is chronically ill and two of their most debilitating disabilities are Ankylosing Spondylitis and Asthma. Demetrious has to deal with chronic illness every day and it is tough, but they will not give up. Chronic illness will not win.

 

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