The Parts of Me
When people see me, what do they see? Maybe they see my skin and think that I’m white; maybe as I enter a room, they perceive me as a cisgender, heterosexual, able-bodied person.
None of these descriptors tell the full story of who I am, but I can own a little of them in certain contexts because perception is reality in a moment. Knowing that people might perceive me in one way, I have to be vocal to be visible. And in doing this, I see how people shift in their attitudes towards me, like giving me authority for no reason at all because they perceive me as a white cis guy, and then in an instant, it’s gone. The reality is, I don’t actually own these privileges in my life.
I feel I am in a constant coming out process with all the parts of me that make me. But as frustrating as it may be at times, it’s important to own all of who I am. I’m a half-Japanese, queer, trans person living with MS – it’s a thing. Every part of me is interconnected and cannot be dismissed.
Part I: Finding Representation
I was 16 years old and “came out” as a lesbian. I was trying to explain to two close friends how I felt about women; that I liked women like a man in this way. They took it as I was a lesbian, and poof, there I was – my perception of who I was at the time was limited by the things I had heard, seen and experienced up until that point in my life.
Growing up, I didn’t have the language or visual representation to understand who a trans-masculine person was. As a teenager, the only thing that I saw in the media were negative representations of transgender woman. It would take a few more years for me to hear and see representation that allowed me to live my authentic self, but in the meantime…
Part II: My MS Diagnosis
I was working in the restaurant business, and I started having some concerning symptoms. I’m horrible about going to the doctor – always have been. I do not like that experience because I have not had good experiences, especially as a queer person. But I had fallen a couple of times and my general manager was concerned, so I decided to pay a visit. I eventually got referred to a rheumatologist because of my family history of lupus. It took 6 months to get in, and when I arrived for my appointment with my partner at the time, it started off fantastic.
We were having a great conversation when the doctor asked me about my sexuality. All of a sudden, everything changed. I told her that my partner and I had been together for about four years and that we had been in a monogamous relationship. She promptly ordered a whole bunch of blood work and wrapped up the conversation. So, we went up upstairs, got the lab work done, and I thought, “this is a lot of blood work, they took a lot of blood,” but didn’t think anything more of it.
When we went back to get results, it turns out that outside of the standard panels, everything else was to test me for STIs.
I kept thinking, “wait a minute, but that’s not why I’m here.” I voiced my concerns and reiterated that I get tested when needed and stay aware of my status to which I was then accused of shopping around for painkillers (despite me not taking any and turning down all medications). I felt that I wasn’t being listened to because I was a woman and a lesbian. This doctor decided to alter how she treated me based on negative, false stereotypes. The doctor stopped listening to me.
I walked out. My entire being and physical symptoms came second to the doctor only seeing my sexuality and the negative stereotypes that came with it in her mind. Because of that, I did not want to go to a doctor for a while. At that point, I was on disability, using forearm crutches quite a bit and starting to use a wheelchair more. In that process, I was getting my car fitted with hand controls and had to learn how to drive with them. The guy at the facility noted that I had lost peripheral vision in my left eye and mentioned that my symptoms look a lot like multiple sclerosis. A few more doctor’s visits later, I got referred to the MS clinic and the first thing they did was an extensive series of MRIs. I had 11 lesions – one on my spine and 10 on my brain. So that pretty much set it. All these years of being passed over and it took a guy who runs a rehabilitation service that teaches people how to drive cars with hand controls to get my diagnosis.
Part III: Living Authentically
About 10 years ago when I was in college studying gender and sexuality, I saw the term “genderqueer” – slowly, I began to hear and understand language that allowed me to put words to my identity. A couple of years later is when I started coming out as trans masculine nonbinary – for me that was huge. I had this identity as a lesbian for almost two decades, and to start transitioning and taking testosterone was a big deal at 38 years old. I spent my whole life working as a woman, being a lesbian – so that was really huge for me. I finally have the language to express this part of me.
This last year, the company I work for started a Diversity and Inclusion committee, and I’m one of the leaders in that community – and it was the first time I came out at work. It’s only been in the last year that I started bringing 100% of my authentic self to work every day. I’m 44 years old, and I’m finally bringing all of me to every aspect of my life.
The fact that we’re having these conversations today is really important as it opens the door for representation and helps others live their authentic selves and be whole complete human beings.
Part IV: Our Layers
Having MS and moving through the world as a trans person made me realize how adaptable I am. Going to the doctor’s office still gives me anxiety. Being able to come out now makes me more determined to be vocal – to be visible. I can use platforms and my voice to push for more patient-centered healthcare and for doctors to hear our concerns as valid.
I have been erased by so many things throughout my life; people only perceiving me in one way. My queer identity and my MS identity are interconnected as I cannot be reduced to a single aspect of my lived experience. I own my narrative, my story, my lived experience – it’s everything in the world to able to do this. For any marginalized community I say: it’s always been our story. We’re all from these intersectional communities and when we join together, we learn and grow from one another.
One of the biggest challenges is overcoming oversimplified, binary conversations. We can’t do this anymore; we have to take the time to get to know each other, to see one another for everything that we are – our lived experiences, perspectives and narratives – and we have to take the time to do it. We can’t do it in your average Facebook post or 280 characters on Twitter (or even a single blog). It’s a start, but we must have larger from a monolithic community, and having MS is a perfect example of this. For those of us with MS, our symptoms are not consistent from person to person. So just as our symptoms are not the same, neither are our identities. If we come from a point of view where we don’t have monolithic understandings of communities, we will find there are so many things to talk about. Stereotypes of communities aren’t conversations. We can come to a place of community to get to know people for who they are and where they are. No boxes, no boundaries.
Missed-Diagnosis : My 4 Early Signs of MS
I’m a smart woman, but even with my level of intelligence, I was ignorant to… Read More
To My Fellow Men With MS
I hope this has helped open the mind of those men who have MS or… Read More