As you may be aware, I live with an ultra-rare disease called cystinosis. Cystinosis is a metabolic genetic disease afflicting more than 2,000 people worldwide. The disease impacts all the organ systems in the body leading to kidney failure, muscle wasting, diabetes, blindness, pulmonary deficiency, hypothyroidism, and neurological damage.
I was diagnosed with cystinosis at around 10 months old. Little did I or my family know that I would face a lifetime of poking, prodding, nagging, cutting, and examining. And because of living with cystinosis, I have been hospitalized many times in my 27 years on this Earth. I have even had about 13 surgeries some of which were major including my kidney transplant and some that were minor. Furthermore, several times throughout the year I have appointments with specialists including nephrology, neurology, cardiology, pulmonary and others.
FBD is a group of adults living with cystinosis who’ve come together to pave a brighter future for the children, teens, and adults touched by cystinosis.
Along with my participation in FBD, I plan to continue to be an advocate and work to push people in power to recognize the importance of fighting for those who don’t have a voice and fight for equality.
However, living with cystinosis means that to create change and find a cure for cystinosis, I must be my own advocate and to do that takes time, effort, and money.
One example is an upcoming conference with the Cystinosis Research Network and Future by Design next year in Philadelphia.
At the conference, I will learn new research findings, receive updates from cystinosis organizations from around the world, have the opportunity to participate in research studies, and interact one on one with many of the world expert clinicians treating and researching cystinosis.
Nonetheless and in addition to my work with the FBD and on cystinosis, I plan to fight for Medicare for All, transgender equality, and Free College for All.
Therefore, I humbly ask you to make a small donation to help further my work on these causes.
To make a contribution please go to my gofundme page or if you would like to become a sustaining member of my work and make a small monthly contribution please visit my patreon page.
As you already are aware, my name is Mika Jayne Covington.
I am 27 years old (which is an accomplishment in itself because of the cystinosis) and I live with cystinosis. I was diagnosed with cystinosis at around 10 months old. Cystinosis is an ultra-rare genetic disease that causes cells in the body to crystallize and die. Cystinosis slowly destroys the organs in the body especially the kidneys, eyes, liver, lungs, muscles, and brain.
FBD was created to help make the cystinosis journey easier. FBD is a group of adults living with cystinosis who’ve come together to pave a brighter future for the children, teens, and adults touched by our rare disease.
One major project of FBD is their Outreach program that works to connect individuals and build relationships within the cystinosis community.
Along with my participation in FBD, I plan to continue to volunteer and work for progressive political change.
As a transgender person, I plan to continue working to end anti-LGBTQIA+ bias and helping fill the education gap in Iowa on LGBTQIA+ issues and history. I plan to fight for Free College for All, Medicare for All, and transgender equality.
Volunteering on these issues takes time, effort, and money. One example is an upcoming conference with FBD in Philadelphia and I will need to pay for travel. This is just one example of my need for support.
Therefore, I humbly ask you to make a small donation to help further my work on these causes.
To make a contribution please go to my gofundme page or if you would like to become a sustaining member of my work and make a small monthly contribution please visit my patreon page.
In second grade, there was a boy in my class, we would go to his house and play games together. At school, we played frequently during our recesses. I seemed to be drawn to him. He always stood up for me against the big bad bullies. He would hug me and tell me,
“Don’t cry, I won’t let’em hurt ya.”
At that age, I did not think that I was different or see that there was anything wrong. I had no idea what being gay meant. I was being me and he was my best friend, which is all I saw at the time.
Later, my family moved to Wahoo, NE, and I never spoke to him again. I was in the third grade when I first heard the word ‘gay.’ I did not understand what it meant, I was too busy playing and being a kid to worry about it. However, kids started calling me gay and a sissy because I was weak and I did not like what most of the other boys liked. I guess I seemed girly. In addition, I had feelings that I did not quite understand. I thought they were normal, so I did not pay much attention to them.
Around the end of the school year, someone called me a, ‘fagot.’ I cried and cried that day. I could not understand what it meant, but it hurt that people would call me these names. I started to feels as thought I was different. I did not know what they saw was bad or wrong with me.
In the fourth grade, I began thinking that I might be gay. I started having sexual feelings about boys. I tried to push them away and tell myself, “No, it’s wrong to think like that.”I started believing that I was sick, and depression set in. I had no idea what to do. I wanted to go back to second grade and be with my friend; he would make all the bad things stop. I tried to pretend I was sick all the time so I would not have to go to school or to leave early to get away from the bullying.
Fifth grade, my last year of elementary school, and first year at the new building in Wahoo, I was so happy. Everything was new, I was excited to have a chance to start over. I thought I could lose those feelings I’d been having. I was so hopeful.
As much as I tried not to be myself, I could no longer hide it. Somehow, my fellow classmates knew. I looked to the teachers to help, but they were very reluctant. I must be sick, I constantly told myself.
Sophomore year at Wahoo High School, was sort of the best and worst year I had ever in Wahoo. I decided I could be ‘normal.’ I worked hard to open up to people and put myself out there. I very much wanted to be normal, to be like everyone else. I decided to try to find a girlfriend.
Thus, I knew my cousin had a friend who I also knew, and we had several things in common. I asked my cousin’s friend to go to the homecoming dance with me at my high school, along with my cousin herself and one other of my friends. It felt like a safe way to attempt to belong.
On New Year’s Eve, I was with my older sister and cousin, while we drank that evening, celebrating the promise of the New Year, I told them that I was indeed bisexual and that there was a guy I liked. My cousin and sister said,
“Yeah, we know.”
They poked fun for a bit, in a loving way, and we continued chatting as we always had. I finally felt like I could be myself.
The following day was a new year and I decided to live openly. I began to experience what living openly means. Including the pain of being gay in a small town high school in the United States and especially in Nebraska, where it was legal to bully and harass a fellow student based on their sexual orientation. To this day, there are no state or federal laws banning bullying or harassment based on sexual orientation or gender identity.
As an openly ‘gay’ student, I began to experience bullying and harassment in a different way, but I decided I would have to live with what was thrown at me. At the same time, I was beginning to feel the hurt manifesting from the fact that I really liked the boy I told my sister and cousin about. I knew the feelings I had for him would not be returned. I thought at the time that he was too perfect. During this time, I was learning for the information I had at hand, that gay and bisexual people do not get ‘perfect,’ and knew they never would.
Soon the bullying and harassment escalated to the point where I needed to leave Wahoo. I became very depressed and angry. I did not completely understand why. I just came out and learned from my research that I should be feeling better. Coming out always makes things better. Nevertheless, I did not feel much better. I was not happy many days. I still felt wrong in my own body.
One day after watching my older sister get her nails done, something happened. I felt that I would like to see how my nails would look painted. Thus, a couple of my friends and I painted my nails. I learned that I did love it.
Soon, I felt more comfortable and I started looking at the tighter jeans from Hot Topic. I knew guys were not ‘supposed’ to pain their nails or wear girly cloths. However, I wanted to wear them. I wanted to wear those things, and they made me feel more comfortable when I did. They also really scared me. I began having problems sleeping and could not stop thinking at night. I also became interested in other things to express myself such as choir, drama, and activism.
In drama class, while still living in Wahoo, I learned that I really like to do make-up, read plays, and act. My drama teacher was the most supportive. She taught me that it was okay to be myself and that included my sexual orientation and gender expression. Because I could not sleep at night, that is when I would end up staying up all night practicing for speech competitions, reading the poems aloud, and allowing the words to connect with my own emotions. Perhaps not the best for my academics, but it may have helped me psychologically.
In 2007, my family and I left Wahoo. Most of that summer we lived in a subdivision of Omaha. When school started, I moved in with my cousin and her family so I was able to attend school with her at Millard South High School. I met so many new people there. People there were finally accepting of me for who I was regardless of my sexual orientation or gender expression. I even met many other openly lesbian, gay, bisexual, transgender, queer, and asexual (LGBTQA) students. Millard South was a safer environment for me. I was able to open up and become the person who I truly was all along.
Millard South even offered many more academic opportunities than the small town school did. I was able to take part in the German program. I was able to thrive there, and I soon gained confidence in myself. I was even somewhat popular, although I attribute that to the fact that I was openly queer and ‘different.’ In many aspects different was good. I might not have been ‘normal,’ but I was accepted for who I was.
Students and teachers at Millard South actually thought something of me. They believed that I could do some awesome things in my future. I had a couple of teachers who believed in me especially when I did not believe in myself. They gave me encouragement. They told me to keep fighting for what was right. They believed in me when I really needed someone, when even my own family was not there for me. I will never forget all that they did for me and I hope I can repay them.
Junior year at Millard South flew bye and the next thing I knew, I was a senior. I was terrified of what would be in my future. However, I could not wait for the end of the year because I wanted to move on to college.
My new pride and confidence did not help me at home. My mother and her boyfriend acted as if they hated me. They probably did. She not only did not understand who I was, she seemed not interested in trying to learn. Her boyfriend, who had been living with us since we lived in Wahoo, had said he wanted me dead. He truly hated me then and will always. He has never told me why and I do not care. They both thought I needed to see a psychologist.
On that particular issue, they were right. I needed to see someone who could help me understand myself. I had known for years that I was different and my time at Millard South allowed me to develop and embrace certain parts of my identity. I knew there was more, but I could not figure out what. I could not piece together why I felt that a part of me was incomplete.
Finally, I did see a psychologist, one that was at Boys Town. She was very nice and LGBTQIA+ friendly. I spoke with her about my research on LGBTQIA+ matters and laws that affect them. I spoke with her about my classes and the many issues. She understood that the problems at home were multi-facet and did have a lot to d with my mother and her boyfriend. She understood that some of the problems I was facing were related to being queer and dealing with the bullying and harassment. The sessions with her helped me to begin to accept a fact about myself that I had previously been unable to come to terms with. I was able to finally come out as transgender. I was able to identify the roots of some of the many problems and discovered more about my identity. I also realized that the only way to overcome the feelings of injustice I had was to continue to fight for my rights, as I had done in high school the year before.
At one of the sessions where my mother and I were at, I came out to her. I remember yelling,
“Well, I am fucking sick of listening to you cry about you cry about your problems! We are here about me! I am fucking transgender!”
That day forward, I began coming out to people. On October 11, 2009, I told the store manager at J.C. Penney that I was transgender and from that moment on, I would be identifying as female, using female pronouns, and prefer being addressed as Mika. I also began the process of coming out at school and requesting my teachers to address me the same.
Coming out as transgender was one of the hardest things I have ever done. It was so difficult because I was so scared. I knew my family did not like me being queer. I was worried about how my friends at school and work would treat me. I fully expected to be fired from my job.
Now, I wonder why I did not notice this sooner. Coming out actually opened my own mind to new possibilities. It helped me accept myself and I was able to improve my academics and work beyond what I thought I could.
It has been a long journey. Now, after nearly six years I am starting medical transition to assist me in confirming my gender. I recently started transgender hormone therapy. The medications I take are to assist in secondary gender characteristics. I take spironolactone (aldactone) to suppress the male sex hormone (testosterone) that my body does produce. Having hypogonadism my body’s sex organs do not produce much testosterone. I also use estradiol (climara), which adds the female sex hormone (estrogen) to my body. Because of the hypogonadism, my body was never exposed to large amounts of the testosterone. Therefore, I was able to socially transition into my true gender much easier.
My friend Tati Urzedowski suffers from gender dysphoria. For him, this means he feels a strong disconnect and sometimes an outright rejection of his body. I have empathy for him because I am genderqueer and understand the hardships of feeling that your body does not fit your gender identity.
About four years ago, Tati realized that he did not quite fit in the gender he was assigned. A year later, he came out as transgender or genderqueer. From that, point on he went through a change in his self-perception and self-worth. He began to live openly among friends as transgender. This year, he expanded his openness about his gender identity/expression and the response from his friends and family has been supportive and accepting.
Realizing I was transgender was by and large a liberating experience for me – Tati
Even with the support and acceptance from Tati’s friends and family, he still suffers from gender dysphoria, depression, and disconnect from his body. He identifies as agender and prefers the gender pronouns he, him, and his. He desires to present himself as masculine, and building muscle mass and practicing postures and behaviors that are more masculine. However, this does nothing to reduce his chest.
There is a distinct challenge getting my identity to be respected and being misgendered can, depending on my mood, completely ruin my day. But it’s a challenge I’m willing to tackle in order for myself and people like me to live their lives freely. – Tati
Tati recently lost his job, and insurance will not cover his gender-affirming surgery. It will cost him over $6,000. He currently uses binders to keep his chest flat. This can cause permanent harm to his body.He is already feeling some negative effects such as more sensitivity and he is more prone to strains and cramps. Because his body does not match his gender identity insecurities are taking a toll on his self-esteem and causing depression.
Frankly, when I look down, I feel like my chest is not my own at all. (…) I want to finally be confident in my own skin and take that stress off my mind. – Tati
I am asking all of you to please visit www.gofundme.com/9drc6k (set up by his friend Ashley) and donate to Tati’s fund so that he can get the medically necessary gender-affirming chest surgery.
I was in second grade when I noticed a boy in my class. We would go to his house, play games, and at school, we played a lot together during our lunchtime recess. I really liked him. He always stood up for me against the big bad bullies that made fun of me because of my bad breath at times. He would hug me and tell me, “Don’t cry, I won’t let ’em hurt ya.” At that age, I did not know what being gay was, I didn’t think that I was different or that there was anything wrong. I was just being me and he was my best friend that is all that I saw back then. Not too long later, I moved to Wahoo, and I never talked to him again.
The following year, when I was in third grade, I started hearing the word ‘gay.’ I did not understand, I was too busy playing and being a kid to worry about it. Kids called me gay because I was weak and I did not like what most of the boys liked. I was a bit girly. Nevertheless, I started having these feelings about boys, and just thought that they were normal so I didn’t pay much attention to them. I was not having any sexual thoughts, just friendship, but strong attachment. One day, around the end of the school year, someone called me a fagot. I cried and cried that day after school. I didn’t understand what it meant, but it hurt that people would call me these names. I didn’t have my friend to protect me anymore. I started to feel like I was different but I didn’t know what they thought was bad or wrong about me.
In fourth grade, I discovered what gay was. I started having sexual thoughts about boys in my class. I started to push the feelings away and told myself, “No, it’s wrong to think like that.” I started thinking I was ill, and began to get depressed and didn’t know what to do. I wanted to go back to second grade and be with my friend; he would make the bad things stop, I thought. I started pretending I was sick all the time, so I didn’t have to go to school or so I could leave early to get away from the bullying.
I started fifth grade, my last year of elementary school, at the new school in Wahoo. I was so happy when school started. Everything was so new. I was excited to have a chance to start over. I could lose those feelings; I’d been having for boys. I was hopeful. Unfortunately, as much as I tried not to be me, I could no longer hide it. Somehow, they knew. The bullying became worse. I looked to the teachers to help which they were very reluctant to do. I must be sick, I constantly told myself.
My sophomore year was the worse and best year in Wahoo. I decided I could be ‘normal,’ I worked hard to open up to people and put myself out there. I just wanted to be normal, like everyone else. I decided to try to find a girlfriend. My cousin had a friend who, I also knew and had some things in common. I decided to ask my cousin’s friend to go to homecoming with me at my high school, along with my cousin. We would go as a group. It felt like a safe way to try to belong.
At the dance, we sat the entire night talking about how we thought many of the other students looked so stupid. My cousin and her friend were from Omaha. They went to school at Millard South High School (MSHS). Therefore, I thought they were cool and sophisticated. I thought they would understand someone being gay or bisexual, and thought that maybe it would be safe for me to come out to them.
That same year, on New Year’s Eve, I was with my sister, cousin, and her friend, while we drank that evening, celebrating the promise of the New Year. I told them that I was bisexual and that there was a guy I really liked but thought he would never like me. My cousin and sister said, “Yeah, we know.” My cousin’s friend said nothing but as the evening continued, it became clear that they were all okay with me, despite my declaration. They poked fun a bit, in a loving way, and we continued chatting as we always had. I finally felt like I could be me.
The following day was a new year and I decided to live openly. I began to experience how to live openly and began to understand the pain of being gay in a high school in the United States of America and especially in Nebraska where it was legal to bully a fellow student based on their sexual orientation. To this day, there is no state law banning bullying or harassment based on sexual orientation or gender identity. As an openly ‘gay’ student, I began to experience bullying and harassment in a different way, but I decided I would just have to live with what was thrown at me. At the same time, I was beginning to feel the hurt manifesting from the fact that I really like the boy I told my sister and cousin about. I knew the feelings I had for him would not be returned. I thought he was too perfect. I began to know that gay and bisexual people do not get ‘perfect,’ and knew they never would.
At that point, I decided that I needed to leave the small town that I grew up in. I could no longer deal with the constant harassment and bullying. I became very depressed and didn’t know why. I just came out and learned from my research that I should be feeling better. Coming out always makes things better. Nevertheless, I didn’t feel any better. I was not happy most of my days. I constantly, felt that I would be more comfortable dressing more girly and really liked the idea of panting my nails. I soon began to wear skinny jeans and black nail polish. I knew guys weren’t ‘supposed’ to wear girly cloths or nail polish. However, I wanted to wear those things; they made me feel more comfortable. They also really scared me. I started having problems sleeping and thinking. I became interested in other things, like choir, activism, and acting. In drama class, I learned that I really like to do make up, and act and read the plays. My drama teacher taught me it’s okay to be gay. Since I couldn’t sleep, I started staying up all night practicing for speech competition, reading the poems aloud, allowing the words to connect with my own emotions.
Photo by Iowa Pride Network
My family and I left Wahoo in 2007, and lived most of that summer in a small subdivision of Omaha. When school started, I moved in with my cousin and her family. I was able to attend school with her at Millard South High School. There I met so many new people. Many people there were accepting of my gender expression. I even met other openly LGBTQIA (lesbian, gay, bisexual, transgender, queer, intersex, and asexual). MSHS was a safer environment for me; I began to open up and became the person who I truly was. MSHS offered so many more learning opportunities than the small town schools I had attended. I was so excited to be able to take part in the German program and really was able to thrive there. I became confident in myself. I even, became somewhat popular, thought I attribute that to the fact that I was openly queer and ‘different.’ Although, there different was good. I might not be ‘normal,’ but I was accepted for what and who I was.
Sadly, as I became more confident and popular, it seemed that my cousin and I began to grow apart. She seemed at times to be a bit upset that I was making many friends in a short time and she had been there for two additional years than me since I only transferred there.
At Millard South High School, students and teachers actually thought something of me; they believed that I was going to do some awesome things in my future. I had a couple teachers who believed in me even when I did not believe in myself. They kept giving me encouragement. They told me to keep fighting for what is right. They encouraged me to go into politics and maybe run for office someday. They believed in me when I really needed someone. I will never forget all that they did for me and I hope I can repay them.
Junior year at Millard Sough High School just flew bye and the next thing I knew I was a senior. I was so scared of what will be in my future but quite excited. I could not wait for the end of the year. I really wanted to move on to college.
During my senior year, I wanted to reintroduce a GSA (Gay-Straight Alliance) club. The last one fell apart a couple years before I transferred to MSHS. After I mentioned my intentions the year before to Mr. Byer, the Activities Director at MSHS, he told me that I had a long process to go through before I could get the club off the ground. Thus, when I decided later that year, after speaking with some other students and several supportive teachers, I went back to Mr. Byer’s office and told him that I wanted to go through the process. That is when he became reluctant to let me start his so-called process. Nevertheless, I was quite persistent, and I he finally caved and told me that I needed to gather at least 50 students names who were interested in joining the club. Instead, I collected almost 300 student’s signatures and about ten teachers to sign a petition asking for Dr. Case, MSHS Principle and Mr. Byer to let me form the GSA club.
About a week later, after I brought the petition to Mr. Byer and Dr. Case, Mr. Byer then requested I provide a sample mission statement, constitution, and by-laws. My next period, I went directly to the computer lab and wrote them all up for him. I went back to Mr. Byer’s office and handed them to him. Of course, he now decided that I needed to fill out an application (which I believed was the only thing I needed to fill out in the first place) and he would have to give it to the school board for their review and approval of the application, he said it could take up to a month for their approval.
Two weeks went by, and I went to his office to see if ‘they’ decided yet. Obviously, they hadn’t and told me that he thought they might not since it is a controversial group. Thus, I decided to agree to wait another week or so and get back with him. Therefore, I went and began my research into what laws protected students and if we had the right to form a club. I found the GSA Network in California, National Center for Lesbian Rights, and the Iowa Pride Network. They helped educate me on the federal Equal Access Act (EAA). According to the EAA, the school cannot deny the formation of my club because the school already has other non-curricular related clubs. MSHS would need to treat the GSA club the same as the Anime or Diversity clubs.
Thus, I brought the law to the attention of Mr. Byer and Dr. Case. Nevertheless, MSHS was not going to follow the EAA; they claimed that I did not understand and tried to explain to me what the EAA ‘said.’ They told me that the law only gives me the right to meet on campus as a club but not give the club the right to use school computers, printers, or make announcements like other clubs. Further, Mr. Byer informed me that I could not form the club but that I could try again next year. Thus, that summer, I contacted the ACLU (American Civil Liberties Union) of Nebraska.
The ACLU documented my complaint and the fact that the school was violating my first amendment rights and the federal Equal Access Act. They told me that they could send the school a letter directing them to allow the formation of the GSA club. They included information regarding the first amendment to the U.S. Constitution, and the federal Equal Access Act. The school responded to them, stating, that they had every intention to let me form the GSA club and that there must be a misunderstanding. Thus, my senior year, I was able to form the GSA. Had Dr. Case and Mr. Byer allowed the formation of the GSA when I first requested, I might never had taken it upon myself to do all of the research to learn about my rights and the EAA. Going through that process, I learned that I was not only okay, but that I had a right to be me. My senior year at MSHS was one of my best and worst years of my life.
My new pride and confidence in myself did not help me at home. My mother and her boyfriend acted as if they hated me. She not only didn’t understand who I was, she seemed not interested in trying to learn. Her boyfriend, who had been living with us since we lived in Wahoo, just wanted me to die. He hated me then and always will. He never told me why and I will never care. They both thought I needed to see a psychologist. On that particular issue, they were right. I was aware; I needed to see someone who could help me understand myself. I had known for years that I was different and my time at MSHS allowed me to develop and embrace certain parts of myself. I knew there were more. I could not figure out why I still felt that a part of me was incomplete.
I began to see a psychologist that year at Boys Town. She was very nice and LGBTQIA friendly. I talked with her about my research on LGBTQIA matters and laws that affected them. I spoke with her about my Advanced Placement Psychology course (which my mother did not help pay for), and the honors German 3 class that I was taking, in addition to my issues at home. She understood that the problems at home were because of my mother and her boyfriend. She understood the problems I was facing related to being queer. The sessions with her, caused me to accept a fact about myself that I had previously been unable to come to terms with. I was finally able to come out as transgender. I had become able to identify the roots of some many of the problems and discovered more about my identity. I learned that I should begin facing those issues. I learned that they only way to overcome the feelings of injustice I had was to continue to fight for my rights, as I had done in high school, the year before.
I finally came out to my mother at one of my sessions I had with her and my psychologist. I remember yelling at her, saying, “well, I am fucking sick of listening to you cry about your problems! We are here about me! I am fucking transgender!” From that day forward, I began coming out to people that I was transgender. That same year, on October 11, 2009, I told the store manager at J.C. Penney where I worked, that I was transgender and from that moment on identify as a female, use female pronouns, and I would appreciate to be addressed as Mika. I also began the process of coming out at school and requesting my teachers to address me the same.
Coming out, as transgender was the hardest task I will ever have to do. It was so difficult because I was so scared; I knew my family didn’t like me because they thought I was queer. I was worried about how my friends at school and work would treat me. I fully expected to be fired from my job. Now, I just wonder why I did not notice that I was transgender sooner. Coming out actually opened my own mind to new possibilities, it helped me finish accepting myself and I was able to improve my work beyond what I thought I could.
